A Mother's heartbreak

For RSD Awareness month I asked a woman from my support group if I could write about her and her daughter's story. This woman has a 20 year old daughter with RSD. I asked her a bunch of questions but during the process she had to stop. It is one thing to live each day fighting this battle but the memories brought up a heartache she thought she had a better control over. Reliving the past few years made her physically ill. With respect and understanding we agreed to not continue with the questions.

Before RSD her daughter was a happy sixteen year old who loved figure skating and ice dancing. She worked hard and would be at the rink by 5am. She also taught beginner skaters twice a week. She was home schooled and part of an Ice Theater group. She was a healthy and energetic teenager.

They are not sure at what point she developed RSD. Her mother knew she needed her gall bladder removed. Before she was able to convince the doctors about the gall bladder her daughter seemingly injured her tailbone while skating. By the time they saw their third gi/colon rectal doctor the pain would not go away. The pain management doctor then decided to remove the tailbone and two weeks later her gall bladder was removed in an emergency surgery. Her tailbone would not heal. She went in for 5 more surgeries and was in the hospital/rehab facilities for another 5 months. When she finally came home from rehab she was walking unaided and was going to continue with outpatient therapy. Unfortunately when her mother checked her wound it had come open again. She had to take her daughter back to the surgeon for another surgery with a 6 week recovery. During this time her daughter became weaker and weaker. At this time they tried nerve blocks without success.

This is when the mother had to stop telling her story. Remembering everything her daughter went through, what she went through as a mother was more than she could bear. I get it. It took me years before I was able to tell people about what it was like for me living with RSD. Living with physical pain also brings emotional pain. You might not be facing a life or death situation but you are dealing with the loss of a life you did have and dreamed of having. I know the physical pain of RSD but as a mother I can only imagine the emotional pain of seeing your child's dreams slip away. This mother once watched her daughter with awe while she was ice skating and now it is a painful memory.

For RSD Awareness Month I ask that everyone remember that the caregivers also live with the pain of RSD. For the sake of the people who live with RSD and the people who love them, please help us bring more awareness. Help us increase our chances of a pain free life!   

Happy First Day of RSD/CRPS Awareness Month!

I have gone back and forth about what I should write about today.  I written about my personal experience too often so what other way is a good kick off for the month?

Definitions!

Last year I was surprised when someone asked me what is the difference between acute pain and chronic pain?  I was even more surprised when they told me they thought it meant "acute refers to a small pain and chronic refers to more severe pain."  No.  These terms reference the longevity of the pain.  Acute pain is temporary pain like from a broken arm, twisted ankle, and some headaches.  Acute pain goes away when the problem area is healed.  Chronic pain is a pain that is intractable and lasts longer than 6 months.  These terms have nothing to do with the severity of pain.

Why do I reference the disorder as RSD/CRPS?  Well, 18 years ago when I was diagnosed the disease was still mostly refered to as RSD but the new name CRPS was slowing growing too.  It all depended on the doctors diagnosing you and which term they prefered.  Most people who have been diagnosed in the past five years are given the term CRPS.  I combine the two names because they are the same thing.  The name change happens because the medical community is still learning so much about this disorder.  Several years ago I did read an article that stated there could be a new name change coming but as a community we stood up and said please no!  It is hard enough to get the support and awareness we need when a name is not known but to keep changing it makes it darn near impossible.  After all RSD is not it's first given name.  Our disorder was discovered back in the Civil War and was named Causalgia.

So what do these initials stand for?  RSD is Reflex Sympathetic Dystrophy and CRPS is Complex Regional Pain Syndrome.  Now, what the heck to they mean?  RSD/CRPS is a disorder of the nervous system.

How does it work?  Usually the disorder begins after a trauma to your body.  This trauma can be anything from a simple sprained knee, a broken bone or surgery.  Occasionally you might not have noticed any transpiring event.  What then happens is that your original trauma heals like it is supposed to but you Sympathetic Nervous System is not misfiring signals to your brain and instead of your condition improving the pain is increasing.  Example; x-rays, cat scans, mri scans, blood work will all come back showing that your affected body part is negative to any problems.  The reason is that the disorder does not live within the affected body part, it is the nervous system that has gone haywire.  This is why so many patients with RSD/CRPS have at least one doctor look them in the eye and tell them "There is nothing wrong with you."  Unfortunately it can take months before a doctor who is familiar with RSD/CRPS recognizes the disorder and gets you started in a treatment program.  These months cost the patient a chance at remission.

In the years since I was diagnosed the medical community has made a lot of progress.  Back then you needed to drive to a major city to find a doctor who treated RSD/CRPS.  Today there are Pain Management Doctors everywhere.  More and more doctors know about RSD/CRPS and I have heard the stories of lucky people who were treated early and about a year later had full remission.  I have hope.  With more awareness we increase our chances.  That is why this month is so important!

RSD and Friendships

On the support group I participate in a parent recently posed the question about how to best support their child with RSD.  Her plea came from a place of love because she has seen on the boards many people complaining about their friends/families ditching them not long after the RSD diagnosis.  As a caregiver she is also affected by the RSD and has felt the loneliness of friends who just don't know how to support her through this trying time.  Knowing how it feels she doesn't want to make those same mistakes.  She asked us, what is one positive thing we as caregivers can do to make your life better and one thing we shouldn't do?

I have always said that it is important to find a support system.  In our support group we often hear of bitter experiences where friends have stopped calling or coming around after the RSD diagnosis.  Battling RSD means we have had to change, our new normal barely reflects the person we used to be.  It is in the midst of this change that many friends back away.  Maybe you liked us because we would go out with you on a Friday night dancing and drinking.  Now, that lifestyle is just not possible but it doesn't mean we wanted to give it up.  We would still love to hang out with you on a Friday night but we can't drink anymore because of our medications and we can't dance because we care barely walk.  We can't even go out to listen to the music because the vibrations from the loud music travel up our bodies and cause even more pain.  We don't want to ask you to do something different, we want you to be a good friend to choose an activity that doesn't cause pain!  It is the fact that you are incapable of thinking like this that makes us wake up to the type of friend you are.  A fair weather friend.  That is why it is appalling to us when the "fair weather friend" accuses us of not being a friend to them, of not calling because friendship is a two way street.  We don't have time or energy in our day to day battle to suffer such fools.

What ever strain RSD might cause on friendships it does help shine a light on those gems that might have been overlooked slightly.  The friend who drives an hour out of their way to help you clean and organize your house.  Walking slow next to you while you fight the pain just so you can go shopping.  Hunting down the handicap elevator at a stadium so you don't have to walk the stairs and then leaving 10 minutes early so you don't have to walk through the crowd.  A friend who helps drive you around when there is a family emergency.  The friend who gingerly paints your toe nails knowing that you wish you could get a pedicure.  The two hour phone calls that keep you distracted.  The lack of phone calls for weeks at a time, because you really are not in the mood to talk.  The funny pictures sent to make you laugh, knowing you are having a bad day.  The understanding that comes from those friends when you miss the important events in their lives because you couldn't leave the house.  Knowing when you are in pain but don't want it to beat you.  It sounds amazingly simple these small things that make friendships shine.  Yet only a few people in your life can live up to these abilities.

Losing friendships is unfortunately a side effect of life with RSD.  It is a heartbreaking condition of life.  I am encouraged though by the friendships I have held on to.  I am encouraged by listening to others tell stories about their caregivers giving them awesome support.  I am encouraged by the Mother who wants to learn what she can do and not do so she doesn't fall into that category!  RSD cannot be fought against while we are alone and lonely.   We need a support system!  Even if you find yourself in a situation where you once had 10 friends and now only have 2 that you can call true.  Focus on those 2 and say goodbye to the 8 who could not stand up to RSD for you.  RSD is hard enough to fight, don't waste your energy on those who are not willing to be a real friend.  Take some time to be thankful for those friends who continue to stand by your side and help you fight.

Coming soon - RSD Awareness Month is November

November is RSD/CRPS Awareness Month.

Many might not realize that I have been battling RSD for over 18 years now.  I am lucky that I have a pain management program that works relatively well.  Maintaining that management program has come at great risk and cost, leaving me disabled from the ability to work.  The benefits though far outweigh the cost as I have the chance to live a good life and care for my family.  I may not be in remission (I could only pray for that day) but my RSD is manageable.  My RSD will continue to be a daily battle but I consider myself on the winning side.

I consider myself a proactive type of person.  I have set up an Awareness event on facebook.  https://www.facebook.com/events/372029616263589/ My personal goal is to get 1,000 people to show support before the end of November.  My plan is to blog as much as possible about RSD topics during November.  I will be sharing information I gather and my points of view about living with RSD.  I have found a website that has a large variety of RSD Awareness merchandise.  http://www.zazzle.com/rsd+awareness+gifts  Leo plans on buying me a shirt from the site for the coming awareness month.

Monday October 21 2013 was a great day for us in a step towards Awareness.  On NBC there is a television show called The Doctors and they did a segment about RSD.  http://www.thedoctorstv.com/videolib/init/9967  The woman who was the focus of the show, Kathy, has RSD after someone accidentally stepped on her foot.  What I liked best about her is that she finds a way to smile past the horrible pain.  She lends her support to others while she is fighting her own progressive pain battle.  Her life, like many others with RSD, if centered around her battle against RSD.  She is proactive, strong, and hopeful.

What can YOU do to help spread Awareness?  First educate yourself so when you do talk to others you at least know what RSD stands for and what it's symptoms are.  You can either google RSD, read the posts on my blog, or ask your loved one about their personal experience.  Everyone has their own story.  Too often RSD'ers feel isolated in their struggle but when you earnestly ask them about what it is like to live with RSD  you will find that they will open up.  Once they open up to you they will instantly feel supported and feel more comfortable leaning on you.  Next, simply wear an orange ribbon, update your status on Facebook that you support RSD Awareness, and tell 5 friends.  Do not worry that you do not understand everything about RSD.  Unfortunately no one fully understands RSD!  RSD was first documented during the Civil War, termed Causalgia but it is grossly misunderstood, misdiagnosed, and under researched.

How can WE change that?  The RSD community has already made great strides in the past 15 years.  Still we struggle to find a reasonable pain management program.  Back when I was first diagnosed I had to travel 2 hours to find a doctor who was able to treat RSD.  Now there are pain management clinics everywhere.  I have had the opportunity to witness the growth within the medical community.  I remember the first time I heard about Ketamine Coma it was only being performed in Germany and Mexico because the United States FDA deemed it was unsafe.  Dr. Schwartzman became the leading doctor by refining the drug treatment into an infusion type protocol making it into a safe, awake treatment program.  Ketamine is just one type of treatment program available, yet nothing gives long term or even permanent relief.  Research has been done that proves RSD/CRPS is the most severe form of chronic pain.  Imagine living your life in that constant state, or at best having a few days of relief before being plummeted back into that high level of pain. That is why we need awareness.  That is why we need to stand up to pain and say we deserve a cure.  That is why we need your support!  

Groceries

When you don't drive and are legally termed disabled - HOW DO YOU SHOP FOR GROCERIES?

My answer OnLine Grocery shopping.

In my area I have two options.  Peapod by Stop and Shop or Shoprite.  I have used both but I currently use Shoprite.  There is even an app for Shoprite on my phone so when I run out of something I can easily add it to my list, no more worries about forgetting to add something to my grocery list.  Remember, with my short term memory loss issues I could walk to the fridge see that I need more ketchup, cheese, yogurt, apples, and hot dogs but when I walk back to my computer I could easily forget one or more of these items as if it were totally erased from my memory.  However there are times when I do forget to use the app as I see we need something.  When that happens I trust Leo to run back to the store when needed.
Shopping online also helps ensure that I get only what I need.  No more quick indulgences.  Now, I only buy soda and chips if we need soda and chips.  Shopping like this ensures you only buy what is on your grocery list.  I can also shop more wisely, meaning I have all the time I need to compare prices. Another great tip is to pre-plan the meals you would like to make and buy all the ingredients you need during this shopping order.  When I plan out my meals I take the guess work out on the eternal question "What's for dinner tonight?"  If I end up not being in the mood for what has been planned I can easily switch it for a different option because I made sure to buy everything I need for each meal option!
I submit my order with the prerequisite 4 hour lead time.  I always choose the option to have Leo pick up the groceries at the store.  I like to use coupons and have found this to be the easiest way.  If you choose to have your groceries delivered then your coupons are deducted from your next grocery order.  At the store a shopper picks up the items you requested however there are times when something is out of stock needing to be substituted or you may decide to just leave it off.  When Leo picks up the groceries he drives toward the side of the store at the loading dock designated just for Shoprite From Home.  A Shoprite employee will walk all the groceries out to the truck and load it up.  Leo gives them the coupons, he pays and drives away! How easy is that?  When he comes home he gives me the computer print out of the items I requested, if there were any out of stocks or substitutions they will all be listed along with a record of what you received.  We also get a normal receipt.  Since I did not spend any energy to go grocery shopping I now have the energy I need to put away all the groceries, with a little help from the boys.  Gabe and Leo help carry designated bags to our basement pantry so I don't have to carry anything down the steps.  Lucas and Gabe help me put some easy items away, like their juice boxes or the fruit.  I also get them to help me with the bags after all the items are put away.  Yes I keep my plastic and paper bags!!!
On a grocery day my daily energy is dedicated to the kitchen work; cleaning, cooking and putting the groceries away. Those three things are my limit but I feel self satisfied at being able to do them.  It would be so much harder and exhausting if I had to actually do the shopping myself, then put away all my items, and still need to have the kitchen clean and make dinner.  In fact it wouldn't be so much harder it would be down right impossible for me.  I am so happy that our store has the option of shopping online.

Here is an example of my meal planning

Dinner Menu

Sunday 9-29 - Dad's House

Monday 9-30 - Roast Chicken and stuffing

Tuesday 10-1 - Ravioli w/Chicken and Zucchini in a tomato sauce

Wednesday 10-2 - Roast Beef w/noodles and veggies

Thursday 10-3 - Pork Chops w/mashed potatoes and green beans

Friday 10-4 - Mexican Fiesta Night (chicken enchilada, turkey taco, tomalito, and yellow rice.)

Saturday 10-5 - Leftovers/eat out

Sunday 10-6 - Shepherds Pie

Monday 10-7 - Roast Chicken with roasted veggies

Tuesday 10-8 - Spaghetti and Meatballs

Wednesday 10-9 - Braised Pork Shoulder with roasted potatoes and brussels sprouts

Thursday 10-11 - Chicken Pot Pie

Friday 10-12 - Turkey Burgers

Saturday 10-13 - Leftovers/Party

School is off to a great start!

It has only been a few weeks but I already see so much progress with Gabriel.  I think this years teachers are exactly what he needs.  As a Mom I cannot tell you how wonderful it is to see him come home from school happy, energetic and confident!  Monday, he came home and said "Guess what I actually understood the new math concept easily!"  Tuesday, he came home and showed off his 85% grade on his spelling test that I did not help him study for and he was so proud!  Wednesday he came home and did his homework telling me that he didn't need any help from me.  Thursday he came home still pumped and happily sat down to study his spelling words. He goes to bed each night without issue and each morning he wakes up ready to have another great day at school.
Let me digress a little so you have a better understand at why this change is so wonderful.  Last weekend Gabe had homework, oh boy weekend homework stinks for everyone!  He was stuck on his math.  He was frustrated and began to emotionally shut down.  I had to look up the math terms he was learning just so I could check his work and help him out.  He told me "I am stupid!" I pointed out that I needed to review the terms just to help him.  "I am D - U - M -B dumb!"  Wow, those are hard words for a Mom to hear her child use to describe himself.  Then I told him "You are not DUMB.  Dumb people don't even know how to spell the word dumb!"  This got his attention.  "What do you mean?  Dumb people can't spell dumb?"  I seized the opportunity because finally I had his attention.  "Exactly! That is why I know you aren't dumb.  Most dumb people try spelling the word D - U - M.  You spelled it correctly because you are smart!  Now, if you just calm down I can help you understand these math concepts."
A half hour later Gabe felt better because finally he understood his math and felt good about it.  After all, even Mommy had to learn it!  I took 5 minutes and sent his math teachers an email to let them know he struggled with the homework but that I was able to help him.  Yes, I included the part of how he called himself Stupid because I thought it was relevant knowledge.  I believe a teachers job is to give knowledge and to reinforce confidence in that knowledge.
So you can see why I am now bragging about the quick turn around in his self confidence.

Lucas is also off to a great new school year!  Twelve months ago he was using about 10-15 words/approximations but they were not spontaneous. We were trying to learn sign language just to fill the gap.  Now, I cannot even count his words/approximations!  In fact he is constantly using his own language.  He speaks in 3-4 word phrases and is constantly babbling away. As his mother I am the one who speaks fluent Lucas so I usually know what he is saying.  I love listening to him babble when he is playing with his toys or when he is trying to sing a song.  He loves singing "The Alphabet Song", "Wheels on the Bus", "Row Row Row your boat", "Thomas the Train", and "Twinkle Twinkle Little Star".  I love to listen to him sing!  The best moments are when he repeats a new word.  About a week or so ago Lucas, Leo and I were in bed cuddling (trying to get Lucas to sleep) and Leo said to Lucas "You are so beautiful."  Lucas then turned around and said "No Mommy beubiball" No, Mommy beautiful!!! Of course we grabbed him kissed him and cried.  Last month when we were on vacation Lucas used a new word so clearly I stared at him in disbelief that it came from his mouth.  I told him I had to get him dressed to go down to the beach, Lucas looked up at me and said "Why?" he said it so quietly but perfectly.  Of course once I regained myself I explained to him.  The next day I was making sandwiches for the cooler and again he asked me "Why?" and in love with this new phase of his life I explained myself.  Each day on vacation he asked me "Why?" at least once.  Never was this the usual toddler curiosity of "Why why why why why?"  In the last few weeks he hasn't used this new word but that is okay.  As we travel this journey of Apraxia I have learned that sometimes words can be forgotten but I have learned to live in the moment.  Lucas and I work so hard together that we need to celebrate our victories as they happen.  I may not celebrate the first few times he uses a new word but if he says something more than 3 times, even if it is just an approximation, then I give myself permission to brag like the proud Mommy I am!  When I listen to Lucas telling me what is going on in the movie he is watching I cannot stop but be in awe of him.  We have a long way to go but this past year we have already made leaps and bounds.  It inspires me to buckle down and get back to work in some hard core therapy.

By the way, Lucas is patient about repeating himself many times just so I can understand him.  It is his normal I know but trust me when I say it helps so much in his therapies!  Lucas may be patient in getting me to understand him but that is the only time he shows that certain quality.  That however is a different discussion.

Lucas talking

I realized I haven't posted a video of Lucas since early June!  He has made leaps and bounds with his speech.  This video is about 11 minutes long.  Please take the time to watch the whole video so you can hear his rendition of "The ABC Song" at the end!

disclaimer: the messy house you will see is a result of life with an active 3 year old.

Not a secret anymore

Within a very tight circle I have kept a secret for the past few weeks.

Nearly 6 months ago our family received the chilling news that one of my cousins was diagnosed with a Brain Aneurysm.  During the course of discovery it was decided that she needed to have a craniectomy.  We have a strong family history of death from ruptured brain aneurysms.  I grew up with the stories of my Aunt Caroline, my Dad's oldest sister and how one day she died suddenly, leaving her husband and three children.  I have some hazy memories of my cousin Connie who died while she was still in high school from a ruptured brain aneurysm.  These deaths were horrific and came on too suddenly.  Knowing our family history and my cousins diagnosis was scary.  The whole family is so thankful she is now okay!
After her surgery she sent an email out to everyone.  Her doctor is urging her to inform the family that we should all begin to be screened for aneurysms.  I took this information and let it soak in.  I did not get up and run to my Neurosurgeon's office but waited for my last post op appointment.  My Neuro reassured me about how rare family aneurysms are.  He wrote out a script for a CTA (because of my SCS I cannot have a MRA) and wanted it done within the week so we could then "Celebrate".  The CTA ended up showing a small bulge on an anterior communicating artery.  Leo and I absorbed this information.  My Neuro referred me to his colleague and we agreed to having a Cerebral Angiogram done.

My Cerebral Angiogram was done this past Monday, August 19th.  As the doctor said "The good news is you don't have any aneurysms!"  I have two blood vessels that have abnormal curves on them but that is perfectly fine.  On September 11th I have my follow up appointment with the doctor.

I am thankful that this is a very small chapter in my life.

Why the secret?  Well, that is just me and how I cope.  As contrary to my blog I am actually not an open book.  Another reason for all the secrecy is that we were really worried what this could do to Gabriel.  Leo and I feel like we have only just recently gotten Gabriel back to himself after the surgeries of 2012.  We kept the potential aneurysm under wraps because it was still an IF.  Gabriel does not need to worry about an IF.  IF the IF turned into something real then we would have sat him down and gently laid it out for him with following it all up by him seeing a counselor.  I am beyond thankful that the IF did not become a reality.

Gabe still does not know what we almost had to face.  It is pointless in telling him anything.  I know I had a small but powerful group of people praying for us, keeping us in their thoughts and their hearts.  I believe in the power of prayer and I felt that prayer carry us through.  Thank you!!!

http://www.bafound.org/  As always I promote AWARENESS ... Most people do not know they have an aneurysm until it is too late.  If you are a part of my immediate family from the Noel side please be screened.

The 18th Anniversary of my RSD

Every person I get to educate about RSD brings us one step closer to better treatments, more remissions and a possible cure.

Every August I work through the stages of grief.  Denial, anger, bargaining, depression, and finally acceptance are all my familiar friends this month.  August marks the time when my life changed drastically.  There was a critical moment when my life went from ordinary to difficult.  I wish that moment had a bigger bang to it, something that I can say "AHA! If only something happened differently."  Instead I have an event that was so common that there is nothing that I could have changed.  Still, the moment had a painful impact as it changed the course of my life.  Denial for me is the fact that I deny the severity of life with RSD.  My anger is directed at how extreme this pain affects my life.  I bargain that I can live with my pain as long as I don't need any more surgeries. Depression comes when I understand that trying to live the lifestyle I want costs my health, sometimes I simply want to play on the floor with my kids without caring that it will cause pain.  At the end of every August I once again find acceptance.  This is my life and I can choose to live it the best way possible.  August is a month of strong emotions and emotional stress.  Grief is not just for those who loose someone they love.  When you loose out on the ability to live a pain free life you are loosing an important piece of yourself.  You loose opportunities.  You loose friends.  The simplest tasks are painful to accomplish.  Yet you cannot give up. 

I remember that day with sadness, the day my life changed forever.  I was 17 years old working at a fast food place, cleaning the tables while watching the clock for the end of my shift.  I wanted to get home, shower and change.  My best friend was already at the house with my sister and we were going to be meeting up with some guys later that night.  In a few weeks school would start and I would be a Junior.  Just that summer I began to realize I wanted more in life. I was finally going to take school seriously, no more just getting by because I wanted to go to college.  I wanted to study literature and psychology with the hopes of becoming a child psychologist.   
I looked up at the clock, ten minutes till the end of my shift.  Casually wiping down tables the place was empty so I was trying to draw this last chore out not wanting to start something else with just a few minutes left.  I took a step to move to the next table and pain shot through my right knee.  I stood still, shocked and puzzled.  I didn't bang my knee and I don't think I twisted it.  Why does it hurt like this?  I remember taking a deep breath and trying to walk, number one rule my Dad taught me was to try and walk it off.  Just putting weight on my leg hurt and I couldn't seem to walk without limping.  I looked around and didn't see anyone.  No one was there to help.  I sat down and tried flexing my leg, bending and unbending it but even this proved painful.  Why am I in so much pain?  I stood up and decided to fight through it.  I needed to finish cleaning up the dining area and I now only have 5 minutes left on my shift.  I limped through the last few tables.  The manager came out and saw my limping.  I told her I wasn't sure what happened but I guess I twisted my knee.  I clocked out and limped to my car.  Sitting there I took a few minutes to try and figure out how I twisted my knee.  I replayed the moments before the pain started but I couldn't put it together.  Then I realized the new dilemma, my car was an old stick shift.  I could barely place weight on my right leg, how the heck was I supposed to drive home?  This was back before everyone had cell phones.  I didn't want to go back inside and use the phone.  I didn't want to make a big deal out of this especially since I didn't know how I hurt my leg.  I summoned the strength to drive home by reminding myself that it was only about 5 blocks. 
By the time I reached home I forgot about the plans we had for the night.  I was in a sour mood and I wanted my Daddy.  I went in the house and straight to my Dad.  He fixed me up on the couch.  Propped my now swollen knee up on pillows, motrin for the pain and ice to help reduce the swelling.  Then he wrapped my knee in an ace bandage.  Two days later my knee was still hurting and I was limping everywhere.  We went to my family doctor who sent me for x-rays that came back negative for injuries.  My doctor agreed that it must be a soft tissue injury so I should stay off of it for another week.  After a few more weeks and the pain not getting any better we were refered to an Orthopedic Specialist.  If memory serves correctly it took some time to get in to see the doctor.  Then when I finally was able to see the doctor he gave me a patella brace (it has a circle cut out for the knee cap and is a tight fitting brace) he prescribed me with extra strength motrin and sent me for a battery of tests.  The patella brace was painful on my leg, my knee would swell up and around the brace causing even more pain.  I remember one time when the doctor wouldn't excuse me from gym class.  My leg was in so much pain and was so swollen that the other girls in the locker room ran to get my sister to help.  My knee actually swelled up over the sides of the brace and the circle piece where my knee cap was looked like it was raised more than an inch out of that space.  My sister and one other girl pried the brace off my knee and then helped me walk to the nurses office so I could go home.

 When I went back to the specialist to hear the results of the tests he looked me in the eye and said "There is nothing wrong with you.  You can continue to take the motrin but you will be in pain until you realize you are not in pain anymore."  I was 17years old.  I didn't understand what the doctor meant as clearly I was in pain and anyone could see the swelling in my leg. 

About a week later I was in the van with my Dad.  I was still using the crutches to help me walk but I had stopped using the painful patella brace.  This is when he had the talk with me.  "You know, if you are still hurting we can take you for a second opinion.  Our insurance will let us get one second opinion.  Not all doctors know everything so if you are serious about how much pain you are in I can tell your Mom to take you for a second opinion."  I remember this moment so clearly.  I didn't know what to say except. "It really does hurt Daddy.  It hurts a lot."  It was agreed that we would go for a second opinion and whatever that doctor said we would go with.  To get the second opinion my Mom needed to take me in to see our family doctor and he needed to fill out a referral.  After a few weeks I was able to get in to see the new Orthopedic Specialist.  He switched me from the painful patella brace to an immobilizer.  An immobilizer is a full leg brace that keeps your leg straight.  As much as it was painful for the brace to be touching my leg it was so much easier than the patella brace.  Being that it kept my leg straight it was easier to apply some weight to my leg, not much but a hobble was now easier on the crutches.  This doctor sent me for more tests, xrays and bone scans.  To be honest he also had a more gentle hand with me than the first specialist, his goal was to get me out of pain.

After we did all the tests we went back for our follow up appointment.  This was the moment of truth.  Depending on what he said everyone would suddenly begin believing that I was truly in a lot of pain.  I was nervous.  I remember that when my Mom and I walked into the office the receptionist was on the phone so we sat down and waited.  When my Mom walked up to the window the receptionist informed her that the doctor was running late but asked if we could please wait for him, he cancelled all his other appointments but was hoping he could still meet with us.  He was coming straight from the airport after being in Florida for a seminar.  I think about an hour went by but maybe that is just how long it felt sitting there waiting. 

Finally we were taken back into an exam room.  I sat on the bed trying to get my leg into a more comfortable position.  I admit that most of what he said is a blur.  What I do remember is when he said "I think I know what is wrong with your leg but I do not know enough to diagnose it."  "I believe you ARE in a lot of pain."  It was at that moment I became foggy, someone finally believed me!  I know he began explaining a lot of different things to my Mom.  RSD or some call it CRPS and how it stands for Reflex Sympathetic Dystrophy.  I remember hearing him explain that no one in the area treated it so I would have to travel to either Philadelphia or New York City to see a Pain Management Specialist.  I know he tried explaining how the pain syndrome works but all I kept hearing was "He believes me."  The seminar he was at was actually about this syndrome, he was just now learning about this pain disorder. 

18 years is a long time.   I have had the privilege to witness the growth in the medical community in it's knowledge about RSD.  During one of my too many blocks an intern informed me that RSD was a two sentence blurb in their medical school education the only way to learn more about it was to find a doctor who treated it and work with them.  I remember a time when the Medical Dictionaries, WebMD, and Mayoclinic.com didn't even list RSD.  When the only website was the RSDHope.org created by the Orsini Family dedicated to finding answers because their son Keith has RSD.  Now if you Google Reflex Sympathetic Dystrophy you can get about 752,000 results!  There have also been more advancements in treatment methods. However none of them are ideal as the best course of action is to get quick and aggressive treatment at the onset of the disease. 

August 13th is my RSD Anniversary.  This year marks the 18 years I have lived with pain.  That is half my life.  It is a time when I grieve and reflect on how much I have had to over come just to live life.  I am always complemented on the fact that most people cannot tell how much pain I am in.  Unfortunately this can be misleading as to the severity of RSD.  In the last 18 years I have had 100 blocks, 2 separate week long hospital stays for catheterizations of blocks, 7 spinal cord stimulator surgeries, about 3 laminectomies, TENS units, I have taken nerve medications, pain pills, NSAID's, muscle relaxors, Percocet, Fentanyl, and Lidoderm/Flector patches all of this to help reduce my pain levels.  I have gone through all of this and while it has helped reduce my pain levels I cannot ever begin to count the amount of days I am in pain.  Still today the pain can be severe enough that I need to use a cane to walk.  In fact a physical therapist strongly urged me to use a walker instead of a cane to help me maintain proper balance when walking during a flair.  I am constantly researching pain treatments looking for the one that could possibly put an end to this pain cycle.  Until that day comes I will continue to fight.  I will continue to live the best life possible and be thankful for the life I have been given.  Despite my numerous treatments and days of pain I have been blessed with a beautiful family.  I will lean on my family and friends to help me get through yet another year of pain. 

This is why support is so important for the RSD Fighter.  "He believes me!"  It is a powerful thought that helps so many of us.  Your belief that what we say is true about our pain.  While I finally had the belief of a Medical Doctor and my family I still had others in my life who doubted.  I remember my algebra teacher who confronted me one day after I was diagnosed but not yet receiving treatments.  I had a hallpass to allow me to leave classes early so I could walk on my crutches through the empty hallways without fear of being bumped into.  This one day as I walked into her empty classroom early she questioned me "You said they call it RSD which stands for Reflex Sympathetic Dystrophy Syndrome?"  I said "yes."  She looked at me and said "That's odd.  Last night I tried looking it up in the medical dictionary and I tried to do an internet search for it but I couldn't find anything on it."  I tried explaining to her what my doctors from Temple University Hospital told us when we asked the same question of him.  She nodded her head and said "That's very odd that there is no real information about it anywhere."  She was right, it is odd that back then you couldn't even get a pamphlet to explain the diagnosis but as my teacher she was wrong for doubting me and my doctors. She treated me differently, as if I was milking the system.  I had others in my life who also doubted, some friends and some family.  I still have people in my life who doubt the severity of the pain disorder.  I cannot help but imagine they would believe me and be more empathetic if I had any other various well known medical disorders. 

Every August I submerge myself in my family.  They are my life line.  Each August proves I have fought through another year with RSD but as each August passes I realize that my fight is one for a lifetime.  I pray that someday we could find a treatment that can place RSD into remission.  I pray that there will come a time where I do not need to be prepared for a flair.  I believe in the power of prayer.  I also believe in myself and that I will never let pain make me loose the life I have built around it.  If I could only make a difference in one persons life then maybe this is all worth it.

If you have taken the time to read this post and if you have read my other posts Thank You!  You have taken a step in helping us reach our goals.  You are a member of my support system simply by reading and becoming aware.  If in your future you speak with someone who struggles with pain and they say "You probably haven't heard of this but it's called RSD." You now can say "Actually I have heard about that and it is a very painful disease.  I'm sorry."  On that day you will have made a difference in someone else's life.  I like to think that small measures such as that can go a long way in helping others.  After all I have had the privilege to talk to others with RSD and learn that their path to diagnosis was quick.  More Pain Management Centers are available as more doctors work with the specialty of Pain Management.  These same doctors have been working hard to find the best course of treatment for their patients and have been on the cutting edge of medicine.  Years ago we read about Coma Treatments being done in Germany and Mexico but have now been revised into safer treatments used here in the USA by a select few doctors.  More and more doctors are stepping up and saying that it is not okay for people to live in a constant state of pain.  More RSD/CRPS patients are stepping up and saying "Believe me when I say I hurt and I want to be pain free!" 

Obviously this is not a HAPPY ANNIVERSARY type of day.  I believe it is similar to the anniversary of the death of a loved one.  After all, it is the death of a life once lived but it is also the birth of a new life even if it is a life filled with pain.  I recently read an article that posed this question "When life gets hard are you going to become like the carrot, the egg or the coffee?"  At first I let my pain make me into the carrot but then as time went by I became more like the egg.  After a few years I realized I could be more like the coffee.  RSD will change you but you can choose how it will change you.  I choose to let it make me into something strong and rich.  I use my anniversary as a time of reflection.  I will grieve over the loss of what was and could have been.  Then I will reaffirm my strength and continue this battle.  I will gather my strength from those who "Believe Me". 

Stress Management

     Everyone has to deal with stress.  An overload of stress can cause headaches, acid reflux, sleep issues, depression, heart disease pain and so much more.  Many disorders have an increasingly negative reaction when the body is under stress.  Emotional stress has a physical result.  The challenge comes in how you handle your stress.  An ignorant method most try to use is the "ignore it" method.  I do not recommend you becoming "ignore it" with your problems.  Trying not to dwell on something that causes you stress only masks your stress and does nothing to resolve the physical pain that accompanies the stress.  So what are you supposed to do?  How do you manage your stress when your stress seems overwhelming?  How do you escape the horrible cycle of stress causing pain and the pain causing more stress?

These are my tips I have developed after 18 years of pain management.

Meditation - An act when you focus on your breathe to release your stress and find a calm state.  This is one of my personal favorites.  It does take work and practice to be able to use meditation during the moment of stress.

Confrontation and Change - This can often cause more stress in the moment but can have a long lasting relaxing benefits.  When you confront the cause of your stress you can reflect and change the precipitating factors.  My personal opinion is that you first master meditation then try confrontation so that when you attempt the change you can focus on your breath to remain calm while encountering the difficulties of the process.  Confrontation and Change can have the best long term benefits to managing your stress.

Cry it out and Laugh it out - It can be an added stress when you do not allow yourself to feel.  Giving yourself permission to cry can have healing benefits as long as you give yourself boundaries.  When your emotions over take you take a few moments to cry and admit how tough life is right now.  Don't choke it back.  Sometimes we all need to dwell on how difficult our situation has become.  Afterwards you need to brush yourself off and become determined to find a workable solution.  Next, you need to find humor in your devastation.  Channel your favorite comedian and laugh at yourself.  Laughter is the best medicine.  Researchers do not know if laughter relaxes you because of the resulting positive attitude or it is just having a good sense of humor.  Personally I believe it is the mind set of the fighter who gets up and says "Nothing will knock me down."

Time Out - As a parent we know the miracle of a time out.  The emotionally high strung child can take a few minutes to regain their composure.  When every little thing is building up and seems insurmountable take a cue from the parenting technique and give yourself a time out.  Choose a spot in your home where you can be alone, reflect, and breathe.  Personally I believe this spot should be where you can best Meditate, Confront, Change, Cry it out, Laugh it out, while giving yourself a chance to time out.

Support - The ability to lean on someone else can greatly reduce stress.  Having someone who will just listen to your woes and be a sounding board when you need to vent helps you be able to work out your own problems.  Sometimes you will need someone who can help you figure out what your next step should be.  Sometimes the best support is someone whose opinion that you trust and value who can then tell you to snap out of it.  No matter the type of support you need the person needs to have your best intrest at heart and is willing to face each obstacle life throws at you.  A support group of people facing the same hardships is always a benefit because then you are "United" and have the ability to see each other's difficult situation.  Personally I find it beneficial when I can be someone's support person because I am able to recognize that my pain has purpose by being able to help others.


Unfortunately you can not pick and choose which one is best for you.  To properly cope with the physically depleting  affects of stress you should learn how to use all the methods for the best results.  Each situation that causes you stress will need an individualized approach.  Chronic pain needs your flexibility to use all of these steps.  Sometimes you will need to use them in different combinations.  All of these steps are easier said than done.  Some of these steps need you to change a part of your personality that refuses the concept.  Personally I am in a constant state of evolving and learning how to best use each step.  I am far from perfect at the practice of stress management.  Gandhi, Yogi, and Jesus probably were the only people who truly perfected stress management.  Be forgiving of yourself while learning how to best manage your stress.  Remember, no one is really going to hold it against you if you have a few bad days.  What is important is what you are doing to change how you cope with stress.

Insanity defined by Albert Einstein - Doing the same thing over and over again expecting different results.

Disabled

It is not logical but for a few years I was embarrassed that I had to file for Social Security Disability.  I had felt like a failure.  My first few years with RSD were beyond difficult so that when I had my SCS give me my life back I valued the ability to work.  When my health began to decline again I fought hard to keep working.  Then after one surgery it became obvious that I simply couldn't do it all.  Something had to drop and that felt like I had failed.  I gave up working and driving. 

I do not like to bring attention to my RSD.  I know, then why do I blog about it?  I don't like to talk about MY RSD but I do understand that I need to advocate for awareness about RSD.  I also do not like calling attention to my pain when I am in a flair.  I have been known to lie when asked about my pain, claiming that I was fine when in fact I was suffering.  I remember one particular day back when I used to work.  My RSD was flaring but I couldn't call out sick.  I waited at my desk till everyone left to go to lunch, explaining that I couldn't go with them because I had to catch up on some work. Reality was that I didn't want anyone to see me limping.  Once the office was clear I limped to the kitchen to warm up my lunch but on my way back to my desk a co-worker saw me and was concerned.  He asked "Are you okay? Why are you limping?"  I knew his concern was sincere.  I just couldn't bring myself to explain the whole story of my RSD to him, so I lied.  "I'm fine! I'm not limping."  Then I forced myself to walk so slowly and put some weight on my leg for a few steps till he turned around and walked into the kitchen.  I wanted to cry from the pain and the sadness of life with RSD.  I didn't want RSD to define me! 

Allowing myself to claim disability was a scary change of life.  What was I supposed to do now?  What are you supposed to do when you are used to working 40 hours a week, having the independence to drive yourself around, and the extra money that comes from working then that is all taken away from you?  Social security doesn't pay much.  It is not like I was suddenly a stay at home mom and I finally had time to go get my nails done or go to the gym for a few hours of exercise.  My choice is not to be a stay at home Mom.  I couldn't work but I also couldn't take care of the home either.  Everything became harder for me and I felt lost again.  My days were spent waiting until Gabriel came home from school so I could spend time with him.  I was lonely, bored and in pain.  I felt sorry for myself and that is not a productive feeling when you have RSD.  I was in a rut for the longest time not knowing how to be disabled. 

It has been hard to rediscover my purpose.  My purpose is about becoming as healthy as possible so I can be the best Mom I can be.  I have set my eyes on the simple.  Be an awesome wife, a great Mom, and be as healthy as I possibly can be.  Taking care of the house, my family and friends while finding time to write in my blog all come secondary to my primary responsibilities of Wife/Mother/Self.  The term disabled hurts because it is a reminder of what I am unable to do.  I would rather think of my abilities.  Sometimes I do such a great job of ignoring my disability that others in my life forget my status.  This is both a complement and a problem at the same time.  It is something I still struggle with.  The only solution I can see is that I have to continue to be me and hope that people will take into consideration that I am being strong whenever I can.  Accept what I can give and respect how I do it.  My only wish is that more people will accommodate my disability without me stating what I am unable to do. 

Attachment Parenting - principal #5.

Ensure safe sleep physically and emotionally.

While researching on the internet for advice in transitioning Lucas out of our bed and into his own I happened across a site called Attachment Parenting.  I never heard of this parenting philosophy before.  Surprisingly it matches the way we are raising our children.  The site will say "the essence of Attachment Parenting is about forming and nurturing strong connections between parents and children."  Isn't that why we want to become parents?  To create a strong bond, a meaningful relationship with our children?  A child is the most precious gift that life has to offer.  From the moment of conception this tiny human depends on it's mother to nourish and protect it.  When an infant is born it depends on it's parents to decipher every cry and coo.  They are tiny human's with emotions and needs.  Attachment Parenting isn't a new philosophy it is a return to maternal instinct. 

I had nursed Lucas for his first year.  When he would cry my breasts would swell and ache responding to his cry for hunger.  My body gave a physical response to my child's cry.  That is natural!  What is not natural is allowing your infant to cry when they need something from their parents.  I get that most people will say "They need to learn to self soothe."  My response is this "How many 20 year olds do you know that still need to be cuddled to have their needs met?  None, because in time everyone learns to self soothe."  My question is, "Why does a 6 month old need to learn how to self soothe?"  Most of the time the answer to this question has to deal with the Mother's need.  It can be very difficult to find the balance between taking care of yourself and your child when those needs conflict.  Balance is necessary to keep a happy healthy and loving family environment.  While caring for your child you must also care for yourself.  I think that is why we often resort to the "cry it out" method.

That is why I tried the "cry it out" method when Gabriel was a baby.  It was exhausting always needing to walk and bounce him till he could fall asleep.  I needed time for myself.  When I did try to let him cry it out I felt so guilty and it destroyed Leo to listen to his baby cry.  Many people told me that I shouldn't feel guilty because I was doing what I needed to do, I was teaching my baby how to fall asleep without me.  After a week we gave it up.  The way Leo and I felt, if my baby needed me then he was going to get me.  Eventually Gabe did learn to fall asleep without me.  Before he was 2 years old he was sleeping in his own bed.  He could still come to our bed if he had a bad day and needed a night time cuddle or if he had a bad dream and needed to be reassured. 

I did try the cry it out method with Lucas also.  Again it was about MY need for a break.  Lucas was a very needed and dependent child.  He not only needed me to cuddle him to put him to sleep but the cuddle needed to be tight while I rocked and bounced him.  My back was aching and I was exhausted.  Crying it out didn't work for Lucas, he would cry for an hour and that is not healthy.  What did work was giving him what he needed to fall asleep and then ever so gently laying him in his crib.  When he would wake for his midnight feeding I would go through the same routine.  It wasn't easy but I kept telling myself that in the scope of his life this is just a small piece of time and what is important is filling his need.  Between 13-21 months old he was sleeping through the night in his own crib.  At 21 months is when he figured out how to climb and fall out of his crib.  He still needed the security of his crib but we had to transition him into a toddler bed for safety.  This transition resulted in his sudden need to co-sleep. 

Hindsight is 20/20.  Of course my boys needed my arms to fall asleep!  Gabriel needed the natural aspects of the Attachment Parenting, resulting in the fact that today Gabe and I have a strong Mother and Son bond.  Knowing what we now know about Lucas' issues it is obvious that he needed that emotional and sensory input that is provided by Attachment Parenting.  I cannot imagine how much harder it would be for Lucas if he did not get that reassurance and comfort that has been provided by co-sleeping. 

There are times like last night when Gabe needs the closeness that comes when you get to be cuddled and fall asleep in Mommy's arms.  I am happy that my 10year old still occasionally feels the need to sleep inside his Mommy's arms.  I am also confident that Lucas is ready to transition out of the family bed but only if we do this in a loving and supportive way.  I believe that any attempt to let him cry it out or force the issue could make his speech backslide. 

Personally I am happy that I have found a site that promotes the same parenting style I have always believed in.  I never judge other's parenting styles as long as the children are happy, healthy and well loved.  There are 8 simple and basic principals to the Attachment Parenting philosophy http://www.attachmentparenting.org/principles/principles.php
1. Prepare for pregnancy, birth and parenting.
2. Feed with love and respect.
3. Respond with Sensitivity.
4. Use nurturing touch.
5. Ensure safe sleep, physically and emotionally.
6. Provide consistent and loving care.
7. Practice positive discipline.
8. Strive for balance in personal and family life. 

Recharge Your Batteries!

Well it is time again to recharge my battery.  Today is slightly different.  Today is the last day of using my current charger.  Tonight I have an appointment for the St. Jude Medical rep to come and exchange chargers with me.  Two months ago I received a letter from the company that they were recalling the chargers because of batteries overheating, causing some burns.  If you receive a letter saying your car's engine is being recalled because it could overheat and catch fire you would drive it back to the dealership immediately.  Imagine if something similar was under your skin.  Not a pleasant thought right?  I am eager for this replacement and yet I pray that everything works smoothly.  There is a chance that IF my battery is too far under my skin that this new charger will not work with my battery.  If that is the case then I need to discuss my options with my Neurosurgeon.  1. Keep my charger and risk the potential of one day it burning my flesh. 2. Surgery to reposition my battery.  Obviously neither option is the perfect choice. 

Kids Crafts!

We have tied dyed and made our own soap crayons.  While fun to create neither one quite turned out the way we expected. 

Tie Dye T's.
I picked a night when Gabe's best friend was sleeping over to pull out this activity.  I figured they needed something other than video game's and Yu-Gi-Oh to do.  They both thought this sounded like a fun idea and were very eager to create their own shirts. This wasn't a great activity for Lucas, his attention span ranges from 5-10 minutes for activities.  I occupied Lucas with finger painting and having the neighbor boy come over to play outside.  The first few shirts we dyed came out okay but the kids lost interest with how long they had to wait.  So I cut the time dramatically down and the colors came out as if they were a bleached out version...not nice.  Leo bought more colors and I have the shirts put off to the side so we can re-do the tie dye.  I have an idea to plan a second (time consuming) activity while we are waiting for the shirts to process.  I am crossing my fingers that we will get a cool effect from tie dying over the tie dye.  I am also interested in finding other ways for the boys to decorate their shirts but when I was at the craft store they only had girly stuff. 
Take a look -

The color bowls

The boys shirts

The other shirts - after the boys got bored.

The Soap Crayons. 
I thought this would be a fun idea.  We have bought them in the past and they have proved to entertain the kids with less water being splashed out of the tub.  So when I read that I could make them at home I thought "Why not?"  I should have known this was not going to work out right.  The first thing that went wrong was when my ShopAtHome order substituted my nameless brand of soap flakes for Tide's powder soap.  Still, I thought let's try this and see what happens.  The process is simple. One cup of soap flakes, one tablespoon hot water (we needed 3-4tablespoons), and food coloring.  Mix until it thickens then create your shapes.  I had pulled out two cookie cutters and told Gabe to use his imagination.  We had 5 different Tupperware containers for each color; yellow, light blue, dark blue, green and purple.  Lucas loved when we were mixing.  He didn't create anything although he did ask me to use the purple soap to create Diesel 10.  Gabe and I made some regular shaped crayons, one finger shaped crayon, a cookie cutter star and teddy bear, a rainbow and some Yu-Gi-Oh creatures.  The clean up process was simple...the backyard hose to wash out the soap.  One small issue was when I had to tell Lucas that we couldn't play with the crayons right away because they needed 2 days to harden.  When the night finally came to play with the soap crayons in the bath the kids were so excited!  Quickly the excitement died away when the crayons didn't really work in the tub.  The dye did not write but it did color the water.  The soap proved to be a little itchy on Lucas' delicate skin.  I might try the project again after I research different recipes or if I find the perfect soap option. 
Take a look -

Ramirez boys being crafty

Lucas mixing the purple soap

Start mixing

The work space

Finished!

What's next!

Gabe's Lemonade Stand. 
Today @ 1pm!  We make the Lemonade from scratch.  Gabe has to make signs to post and promote.  At 50cents per cup he learns the value of his time, the product and his salesmanship.  He needs to handle the money making change as needed.  At the end of the sale he gets to count his money and of course spend it!!!  This is a summer time project that is truly giving him lemons and asking him to make lemonade.

Self Contained EcoSystem
I am researching the supplies we need to create our self contained ecosystem.  I need to find; a few drops of dechlorinator, aquatic plants, snails, fish, crickets, pill bugs, earthworms, aquarium gravel, soil and gather some basic household stuff.  Here is a link to what we want to do.  http://cranberrycorner.blogspot.com/2010/07/summer-fun-ecosystem-edition.html  Gabe loves science and I think this could become a great family project.  It will be interesting to see how long this mini self contained ecosystem can last. 

Yesterday, Gabe finished his first Summer Reading book "The Infinity Ring" so our next step will be a book report.  I also have plans to put his imagination to work this August by creating a math game from his YuGiOh cards.  More great projects/activities/crafts to come...

Sunday chatter

If you are a frequent church goer with a small child you attend mass prepared to keep your small one entertained.  My personal tricks involve fruit snacks and toy trains but if those fail to keep him occupied Leo or I will take Lucas out for a walk in the Gathering Space.  Our focus has always been to keep Lucas in his seat.  I know most parents try to keep their little one quiet but that has never been our issue until yesterday. We were sitting in the front row on the left side of the church.  Lucas was in the pew playing with his trains when suddenly he started making car and train noises!  He sounded louder than usual but only because everyone was quietly praying along with Father Justin.  Leo and I watched Lucas with huge smiles on our faces.  We didn't try to stop him either.  Lucas making the car sound is like an answered prayer.  I started to cry while listening to this small miracle.  What 3 year old doesn't make engine noises when playing?!  Up until 2 weeks ago Lucas did not know how to use his voice to make these noises.  It started one day when we were in the backyard and he pushed his pretend lawnmower making lawnmower noises.  Leo rushed over to get me to pay attention and we both held on to each other in total awe of the moment.  We know we still have a long way to go to resolve his Apraxia/Dyspraxia but at this moment in time we are enjoying our victories. 

Summer time fun!

Summer is in full swing.  I am cooking on the grill more days than in the kitchen.  The boys spend more days in the swimsuits than fully dressed.  Attitudes are more relaxed and the kids are exhausted by bedtime.  Gabe even likes Summer School!!! 
As I am typing this post I am sitting outside on my patio set watching the boys run around the yard splashing each other.  While some people might complain about the heat I enjoy it as it warms my bones.  I still need to be cautious of the humidity, stress, and those days when I simply over tax my body.  At least in the summer I don't worry about flairs due to the weather (or as humidity applies I don't worry as much).  An added benefit is that the summer months are typically less stressful.  All things considered, Summer is a time for fun! 

Yesterday was the Fourth of July.  We spent two hours at the beach, had dinner and ice cream then we took the kids to the movies instead of watching fireworks.  At the movie theater we had an interesting experience.  Lucas had been doing great that day with using the potty.  We had on the same swimmy diaper most of the day "Why change it if it hasn't been peed in?"  In the truck I told Leo I was going to change Lucas into a real diaper as soon as we went into the theater.  As we were walking in the parking garage Leo says "Why is Lucas walking weird?"  Then he noticed it.  The drip down Lucas' leg.  Our first thought was "No big deal.  Take him back to the truck and change him into clean shorts. We have plenty of time before the movie starts!"  I lift Lucas up, taking off his swim shorts as he is standing at the edge of the truck.  When I take off his swim diaper my foot gets splashed with pee! I am talking about as if someone dumped a cup of warm water on your foot but in reality it is pee!  I am so glad I had cheap flip flops on!  Lucas' shirt and body was soaked with pee. We checked his car seat and it was damp.  The diaper bag was packed with an extra pair of shorts but not a shirt.  Leo looks up at me and says "Target is across the street.  Lets go buy him a clean outfit and we should be able to be back in time for the movie!" It worked!  We were back in time for the movie.  Despicable Me 2.  As a family we laughed and had a great time.  We also have the funny story of how Lucas' diaper splashed my foot with pee.  Isn't that what summer is all about? 

How does your family enjoy the Summer?  Do you use it as a chance to spend more time together? 

Day 1 Summer Vacation

My own internal clock did not realize that today is a sleep in day.  The kids internal clocks surely registered the vacation schedule.  I took advantage of the quiet house by enjoying a cup of coffee while watching TV without being disturbed.  NICE!  Then Lucas was up.  He wanted a banana.  Okay that is easy right?  Well, a few bites into his banana it broke in half.  Lucas is picky about his banana's.  First you have to have the peel taken all the way off and second it has to stay whole.  I tried talking to him about eating the banana anyway. Nope, he wouldn't have it he needed a whole new banana.  I get him situated and head up for my shower.  Five minutes later he walks in and opens the curtain to "talk" to me.  Lucas thinks I need company while I shower.  This is why I usually take my showers after he is at school. 

Gabe is doing was pre-teens do in the summer.  He is laying in his bed, watching TV and planning on staying in his pajama's all day.  When I went upstairs to lay down on him and bug him I told him he has to at least read 2 chapters for me today.  I have no problem with using the first day of summer vacation as a lazy day.  However it is 9am and the boy has not come down for breakfast yet.  I am debating telling him to get his butt downstairs or just letting him come down when he gets hungry. 

Today's plan is simple.  I am going to clean my kitchen and get the kids outside to play while the sun is shining.  Gabe can read his two chapters while laying down in the hammock after that he can play video games.  Lucas can have fun playing in the pool, in the dirt, and whatever else will make him happy.  Tomorrow, will be slightly different.  I am going to let the boys have a lazy morning but then we will start implementing their chores.  Next week starts the Extended School Year (ESY) program and that is when the fun really begins. 

I have joined the Pinterest movement.  There are so many fun and educational craft idea's on the site!  I have "pinned" the ones I think the boys will enjoy.  I plan on blogging about the ones we do, complete with pictures and maybe video.  Homemade playdough, baking soda and vinegar experiments, and painting crafts are all fun ideas for Lucas.  A fun science experiment for Gabe will be creating our own ecosystem in soda bottles and growing our own crystal tree.  I just need to buy some supplies for these experiments then we will be ready to go! 

School is out and Summer Vacation has started.  I think we have ours planned out perfectly.  Keep checking back to see what crafts and experiments we have tried.  Enjoy your summer!!!

Summer Fun

   First day of Summer! The boys are still in school thanks to Hurricane Sandy but they will be done by early next week.  I had hoped to spend this week organizing the playroom, their bedrooms, and the activity cabinets but I am on day 2 of a flair so my priorities have shifted.  I need my leg well enough to spend all day Saturday having a fun time as we have two seperate birthday parties to attend.  The first is for a special little girls first birthday and the second is my sweet little neices' 3rd birthday.  I am going to have a great time on Saturday, lay low on Sunday, and then get organized next week. 

I love Summer time with my boys.  I have expectations of them but mostly it is a relaxed fun time together.  My goals for each boy this summer is simple. Gabe needs to read and type 2 book reports. Lucas will be working on the T and W sound.  The boys will have to do their chores each day. Lucas is not big enough to make his bed or put his clothes away but he can help me. Last summer Gabe had learned how easy and rewarding it was to tidy his room up each day. He also realized that if he did it every day then it doesn't take an hour to clean his room, it should only take 15 minutes tops!  I plan on having some fun crafts, playing out in the sun all day, and late nights by the fire roasting marshmellows.  I just need to organize each area to give everyone a good start to this fun packed summer. 

I need to go through our book shelves and get them organized.  The playroom needs to be thinned out and cleaned up in an organized way.  Our craft cabinets need to be dumped and restocked.  The boys rooms need a good cleaning and reorganizing.  I have till Tuesday to get my list completed. 

Each week of Summer I have to be flexible with the schedule in case my leg starts a flair.  If I am feeling good then we will be taking walks, playing at the park, going on adventures, and anything else that I can think of.  If I am not feeling good then I have to keep the boys home but still pack some fun into those days, even if it is a movie or a stationary activity.  I just need to figure out some creative ways to exhaust Lucas (the energizer bunny) when I am unable to move around.  One fun thought is setting up the sprinklers, kiddie pool, and water guns!  Sun and water always wear out the kids while I can just sit with my leg up soaking up the sun. 

My plans might already have  been sidetracked but my motivation is the same.  My boys will have a great summer!  Now I just pray my RSD behaves and allows me to have more awesome days than flairs. 

Why I blog...

If you know me then you know I am not a whiner nor do I sit and complain about how hard life is with RSD.  So then why do I blog about it?  Why do I spend so much time writing about it and promoting awareness about something I don't complain about?  I think there is a delicate line between advocating awareness and complaining about living life with pain.  I have lived so much of my life trying to hide my pain from everyone but I realized that I was doing more harm than good.  My purpose of hiding my pain was to live my own life without the pain defining me but my logic was faulty.  No matter what, RSD does define my life.  I have learned how to balance my life with RSD.  I have worked through the grief and self education on what it means to have RSD for the rest of my life.  I have this knowledge so I must share it with the hopes that if I could help just one person then my pain has purpose.  You know that cliche' 'Turn lemons into lemonaid' wll, when you have debilitating pain you can advocate for a better understanding of life.  Sitting on the couch or laying in bed gives you a lot of time to become introspective about life.  You also learn what is worth fighting for and what should just be ignored till it fades into the background. 

I have mastered how to live my life with pain.  So imagine my surprise when I had to field the curve ball of Lucas having a speech disorder.  Then just as I am recovering from my 7th SCS surgery I learn that Gabriel has a Learning Disability, maybe multiple learning disabilities of Dyscalculia and Dysgraphia.  I have had to learn how to apply what I have learned about my own life towards learning about Lucas' speech problem and Gabriel's learning disabilities.  Keeping the complications of life in the shadow's is no longer a smart option.  It is time to step out and start sharing my life and all the complications that come with it.  Not to look for pity but to educate and promote awareness.  I do not believe that I live my life in an extraordinary way.  I refuse to be steamrolled by anything that is thrown at me.  I am not a survivor, I am a fighter.  I believe in taking control of the situation and fighting for a favorable outcome.  I will not simply survive but fight for the win.  My children deserve the best I can give them and I will not let my pain get in the way.   

I don't believe I do anything extraordinary.  Sharing my life, imparting my view, and recording the process of figuring out how to best help my children.  That is why I blog. 

* Note: I wouldn't be able to do any of this if I didn't have Leo to lean on.  He is my rock.

Feeling good but drained.

Yesterday was my birthday and I have been flair free for the last 3 weeks.  I am one of those women who loves dressing up.  I felt good so I put on my jeans that hug my butt just right and a black top that shows off my curves.  I blew my hair out and wore date night makeup.  I even wore my red pointed toed high heels, I love those shoes! 
That is why it was so funny that my Mom asked me "So how long has your leg been hurting?"  She didn't pay attention to the shoes, I cannot wear those shoes when my leg is hurting.  Her worries that my leg was hurting were put to rest when she had to watch me chase after Lucas, in those heels.  Lucas thought it would be fun to run wild in the restaurant, around the indoor water fountain.  Actually, a lot of people thought this was a funny sight including the wait staff and other people enjoying their dinner.  One little girl who was tossing her pennies in to the fountain tried to high five Lucas as he was running past her!  Finally Leo got up and we trapped Lucas. 
When I sat back down my Mom said "If your leg wasn't hurting before it will now!"  UGH!  I don't like to think like that.  I don't like to think that a few moments of fun, a great family memory, could mean that I will have to deal with pain that takes away my ability to walk.  It is a fact but one that I choose not to dwell on.  I rather enjoy the memory of chasing after Lucas who was laughing like only a small child can laugh. 
Today I am being proactive.  I am resting, sitting on the couch, keeping my leg warm and doing my alphabet rolls.  Currently I am planning on keeping a restful morning I may turn my Spinal Cord Stimulator on a low setting while doing some little household chores this afternoon. 
While I am being honest my energy is drained today.  I am not as energetic today as I have been during these past few weeks.  Maybe the weather is playing a part in the energy drain.  Hot one day then a cold rain for a few days, my body has a hard time keeping up with the dramatic changes.  I am going to take an extra vitamin B12. 

I had a great birthday yesterday.  I had my family next to me.  I felt good and made some new great memories.  I am 35 years old.  I have had RSD for over 17 years. 

Please don't feel sorry for me.  My RSD makes me cherish the silly memories of chasing after Lucas.  Many parents can take for granted running after their child.  For me, it is an awesome feeling to chase after him.  I focus on the good.  I have a good life!

Winding down and gearing up

Less than two weeks our home will officially be on Summer Break!  YAY!  Uhoh!  I can tell Gabriel is getting the senioritis.  Senioritis is simply when they are DONE, he is done with this year.  Gabe is ready for the break and ready to move on to Fifth Grade.  As ready as Gabe is for Summer break he is also slightly upset with me for signing him up for the Extended School Year (ESY) program.  Lucas is going too so that takes some of the sting out for him but still, he feels like I am robbing him of his summer.  Too bad kid! 

As Gabe is winding down from his school year I am gearing up on Summer plans.  I always tell Gabe he is lucky having a Mommy that doesn't work because I get to spend the whole summer with him.  I enjoy having my boys home with me for the short 10 weeks.  I do my best to fill our time with structure, responsibilities, relaxation and activities.  Some of my plans have to be loose and flexible considering my health.  Summer is the time of year when my RSD doesn't bother me as much but the constantly active aspects exhaust my chronic back pain. 

I strongly believe children should have a combination of relaxation and responsibility over the summer.  No couch potatoes or vampire video gaming in my house!  During the school year the focus is on the importance of academics.  During the summer the focus is placed on being responsible for a clean room, getting some natural vitamin D and then he gets gaming time.  This year I am also throwing into the mix that he reads and writes 2 book reports for me.  All of this may sound extreme but if you break it down it is quite an easy accomplishment.  If Gabriel reads between 1-3 chapters a day he could easily accomplish both reading his books and writing two reports before we go on our summer vacation.  As with any major accomplishment there is always a reward at the end. 

Here is how I will be breaking down our summer schedule.

7:30am Rise and Shine - Breakfast and get dressed for the day.
8:30 - 11:30am Summer School
11:30 - 1pm Lunch and Fun outside
1 - 1:30pm Clean room
1:30 - 2pm Read (however long it taks to read the chapters designated for that day)
2 - 6pm FREE TIME (as long as he did everything he was supposed to do!)
6pm - 8pm Dinner and Family time
8-9pm Shower, family and relaxation time
9-10pm bedtime(flexible because he is getting older)

Sounds easy right? Summer school is only for the month of July so when August starts we will switch up the schedule.  The reading and cleaning will change into those earlier hours and leave the rest of the day open to more fun. 

I am looking into activites to include into our weekly schedules.  Lemonaid stands, constructing a birdhouse and taking nature walks are amoung some of our favorite standby's.  This summer we are also going to borrow my parents tent and camp out in the backyard.  I may also plan an end of the year sleepover party for Gabe and his friends.  These are some of the simply and cheap summer plans that make a big impact for kids.  If you want to see your 10year old get serious about cleaning his room tell him he can have a few of his friends come over for a sleepover!  He will run and do anything you ask with a smile on his face.  That is called positive reinforcement! 

Lucas has an easier schedule obviously.  I cannot ask a 3 year old to read for 30minutes and then write a book report. I can try and fail to get him to pick up his toys every day.  I am trying to gather idea's of what I can do with him to instill the sense of Vacation Fun!  I want to center Lucas' activities on his speech accomplishments and goals.  I welcome suggestions from other Apraxic/Dyspraxic Mommies! 

I am considering other fun activities that we never did before as a family.  I have read in 'New Jersey Family' magazine about an Open-air Theater for kids that sounds like a fun new experience!  We have never been to the State Fair Meadowlands.  Maybe if we have a rainy day we can try one of those Dine-In MovieTheaters?  Sure these are the options that you throw money at but having a new experience as a family is priceless. 

As always (well except last year) we end our Summer on a BANG! with our family favorite vacation to Ocean City Maryland.  For us this is the best way to end the Summer and start a new School Year fresh.  During that week we live it up.  We eat out 5 nights out of 6.  We spend our day at the beach finish it off with a swim in the pool then clean up for fun either in the game room, at the board walk or playing mini golf before heading out to dinner.  We fall asleep to the sounds of the ocean.  Gabe and I love walking the beach in the early morning to look for the perfect seashells while watching the sun rise above the ocean.  Leo and I have dreams of retiring in Ocean City MD. 

The kids may be winding down from the school year (only 2 more weeks) but I am gearing up for my 10 precious weeks with my boys.  Obviously life doesn't ever go as planned for me but that is why I make back up plans and keep both plan A and plan B very flexible.  These last 3 weeks my pain levels have been managable so I am praying that the rest of summer keeps the record going!  If not then the kids will enjoy down time with Mommy until she is better enough to do the active and outgoing activities she has planned.  Either way, life goes on and I will do my best to give them a great summer!  Only time will tell which plan gets put into action.  :)

Chatting it up

It is no secret that I have been busy lately.  I had a flair that began on Mothers Day and lasted over a week and then for several days afterwards I was in recovery mode.  This past week I have been feeling good and trying to get my house back in order.  Gabe's grades are coming back up.  Last week we worked on his final book report for the year.  Lucas has become so much more vocal lately and has become a little mimic, repeating what we say.  He is not always clear but I have become fluent on Lucas Speak!  His vocabulary is growing and he surprises us with his new words constantly.  Leo and I are always filled with pride when someone besides us is able to understand what Lucas is saying.  A few days ago we had one of those moments when one of Lucas' previous teachers had the chance to hear Lucas and understand him.  It was a very touching moment, one we will always remember. 

I never want life to pass by in a total blur.  That is why I love taking random pictures of the kids and the occasional video of Lucas talking to us.  It is not always easy capturing his verbal moments because he doesn't like to sit still to talk while I record him.  As you can tell when you watch the YouTube video's I post! 

This is a video from April 24th http://youtu.be/fdmmLm_iGcs
This is a video from May 7th http://youtu.be/yXFsr2exr18
This is a video from May 21st http://youtu.be/iNm0-4vk9mA
This is a video from today, June 5th http://youtu.be/J0gPV28wIWo

And here are some pictures of my boys! Thank you God for my blessings in life.