Thursday, October 2, 2014

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.  

Monday, September 29, 2014

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.