jmainville1976@hotmail.com

Wednesday, August 7, 2013

What illness takes from us...and what we don't have to let it take from us!

There are certain truths when it comes to living with a chronic illness that doesn't have a cure...yet.  One of those truths is that there will be things that you used to do without much thought in the past that you will have to weigh out the risk/reward ratio.  It's hard to do when if you are, like me, a person who wants to do what she wants just to prove that she still can!  Maybe it's my pride, maybe it's me being perseverant.  Either way, I know that I can't ignore it.  The harsh truth for me is what happens after I go into "Wonder Woman" mode.  I'm usually down for the count for a few days.  Another truth is that my health is like playing a game of Minesweeper on expert level.  Sometimes I never know what's going to happen.  Sometimes I luck out...sometimes I go to my doctor to hear that I have a DVT in my calf.  What gives?  I know I have to take it easier than I would like to and sometimes I rail against that.  When I feel good, even though I know better, I will ride that high because I don't know when I'll have another awesome day again.  I want to take it all in!

Here's what being sick doesn't get to take from me.  It can't take my self esteem away from me.  Admittedly, losing some of my hair when I was on plaquenil did do a number on my self image and that affected my self esteem.  However, my daughter introduced me to the world of hats that are cute and that hide hair loss.  I'm not on that medication any longer and my hair did grow back but even if it hadn't, I had a lot of really cute hats!  Being sick may sap me of energy, but it's not taking the part of me that can dig in and climb!  Being sick can't take my sense of humor away!  I like laughing too much to turn into an angry person who sees nothing to laugh about in the world.  If I didn't laugh, I would cry.  Being sick doesn't make me unlovable by my family and friends.  No, lupus.  You don't get to take that away from me! 

Sometimes it's hard to keep getting pummeled by health problems and it's exhausting, both physically and emotionally, but I just remember that I'm tough and my toughness belongs to ME!

Monday, June 17, 2013

Remembering how to be more than a physical shell.

A wonderful question was asked just yesterday on an awesome FB page called "World According to Lupus" and that question made me take pause and reflect.
 
"Describe one thing that you have learned since you first got sick ."
 
It's a challenge to pin down just one thing since being sick forces us to learn (and learn...and learn...) many things throughout our lives.  I know that I've had to learn to ask for help when I need help.  I've learned to prioritize my "to do" list because if I try to do it all, I'm just asking for trouble.  I've learned to listen to my body's cues and not ignore them.  When I don't listen to what my body is telling me, then I end up regretting it deeply.  In my life, and I'm sure that any chronically ill person will agree, learning is a constant state of being.
 
My answer to this questions was this:
 
"I've learned that I have to remember that I'm more than just a physical body. If I don't remember that, then I will find it so much harder to find anything in life to be joyful about or to fight for."
 
I wanted to expand on my answer.  When the pain gets so intense that I can scarcely think of anything except the pain, the last thing on my mind is looking inward and remembering that my body is just one part of me.  It's hard to be aware of anything except how completely devastating the physical pain is.  It takes so much effort to climb out of emotional pit that constant pain digs for me.  The more intense the pain is, the deeper into the pit I fall.  And it's a free fall.  There is no rope to grab nor is there a soft landing when I eventually hit the bottom. 
 
That's the most important lesson that I'm learning.  I know it's a life long lesson and I know that there will be times in which I'll struggle with that lesson but I'll always try to apply it in my life.  It's the lesson that has been the difference between finding joy or humor in moments, and the strength in myself and drowning in a bottomless pool of despair and misery. 
 
 
 


Wednesday, May 29, 2013

I should just have all of my passwords be "password"...

Wow.  I can't believe how long it took for me to finally remember my password so that I could keep up with my blog!  Better late (really, really late) then never.  I wasn't ready to give up on this blog.  I put a lot of myself into it and to start over with a new blog would have been quite the kick in the ass for me. This brings me to tonight's blog.

I'm learning so much from being knocked my ass repeatedly.  Truly, I am.  I have to!  If I didn't use the experiences that I've had to learn from, then every one of those experiences would have been pointless.  I know that in the grand scheme of things, I'm losing...but I don't have to lose the lesson.  

When I have a good day, my experiences have taught me to enjoy those days and wrap myself in the memory of how good I felt that day and to really appreciate the gift of a good and happy day!  The good days can often be few and far between so I'm learning true appreciation.  Now even if I'm having a really rough day, I can go to that mental good day vacation and hold the happy feelings in my heart and let that help see me through the rough days.

I'm learning to slow down when it's necessary to do so instead of hurting myself by not listening to my body when it tells me "Whoa Simba!  How about you just take some time to rest instead of being too stubborn and proud to know when it's time to just stop."  That is an area that I struggle in.  I think that I should be able to do everything that I could do before getting sick and I'm often too proud to ask for help when I need it.  I'm learning that asking for help is not a sign of weakness.  I know it's going to take practice for me in this area but I'm not going to give up on learning this lesson.

I think that the most important lesson that I can take away from this health crisis journey that I've been on is that I'm strong.  I'm not trying to psych myself out with talk of being strong.  I know that I'm strong now.  I most definitely fall a lot and I most definitely let myself feel sad, angry, frustrated, etc...BUT I always get back up again.  I may get up slower than I used to, but I still get back up.  I'll always keep getting back up.  It may not be graceful.  It may not be inspiring.  It may appear that my perception of getting back up is really insignificant because it could be something as simple as I walked up and down the stairs with minimal pain, but to me, that's a pretty big victory!  I know that I have a lot of strength that I can tap into and the strength is the catalyst for me to rise up!

Sadly, I'm learning that "normal" is going to take on a new meaning for me.  I still struggle with that but I know that with enough time and patience with myself, I can thrive in my new "normal".  It doesn't mean that I have to like it.  It just means that I have to pull myself up and embrace the new "normal".  My goal is to turn my "normal" into "my normal",

It's been a hard journey for me and I knew that I could never run away from it.  I found myself at a crossroads and I felt stuck there for so long.   There was a choice be made  by me.  I could choose to just give up and let my body just beat me down and then just stay down or I could choose to not accept being defeated and to try my hardest to keep going and cherish the victories that I achieve, no matter how big or small that those victories might be. 

I'll never quit.  "Quit" is just another 4 letter word in my vocabulary.  I may have moments of weakness and sheer terror over what the future holds for me but I'm stronger than my fears and Steve hold me up when I have times that I'm running seriously low on inner strength.  The love that Steve gives me is so often the difference between me feeling like everything is hopeless and the feeling that I'm loved and I'm strong.  I married a wonderful man!

So, that's all I have for this blog entry.  Sometimes painful experiences prime us for being ready to handle anything that life has thrown at us.

Thursday, March 7, 2013

It's very calm this morning...almost too calm.

I didn't sleep last night.  I think that had I just left the TV on and watched it until I eventually fell asleep then I wouldn't feel the way I do at this moment.  Not sleeping gives me time to think about how incredibly fragile I feel right now. 

I'm afraid.  I'm not always the best with words and that is especially true when I'm expressing fear.  Sometimes I feel as if the best course of action for me is to just take my "Baby Junior" replacement that Steve got for me after my old "Baby Junior" somehow ended up headless, my Care Bears, my "Kitty Blanket" and my "Prayer Blanket" and just assume the fetal position until the storm passes. 

I know that it takes time to recover from ailments like blood clots and I know that I need to be patient and give the medications time to stabilize.  I know that it can take a while before my INR is within the range that I need it to be in.  My blood is monitored closely and when changes need to be made, they get made.  I know that I'm in good hands but I'm still filled with the kind of fear that makes me want to hide because I know that if I say that I'm scared, then I'll have to confront those feelings and it's pretty much a given that I'll cry if I talk about it.  I don't want to cry anymore.  I've done enough crying to last the rest of my life.  Fear isn't the only emotion that's smacking me around right now.  Anger came to keep Fear company.  I'm angry at myself for ignoring the pain in my leg for as long as I did.  I know better than that!  I'm angry at my body for treating me like the enemy which I know isn't logical, but my emotions are currently the ones who are in the driver's seat and I'm just a passenger in the back seat and that pisses me off! 

Life has become...painful.  Daily injections of heparin, doses of warfarin, constant finger pokes to check on my INR followed by adjustments to my medication.  Thankfully, I handle that kind of pain well.  It's the fear that debilitates me.  It's like a cloud hanging over my head, just loaded with blood clots to chuck at me. 

OK, my "sad party" is done now and I'm ready to put my "big girl panties" on and face the day with hopefully a bit less fear and with some more patience and serenity.

Tuesday, November 20, 2012

Gordon Ramsay's the man!

I love Gordon Ramsey!  I like to live vicariously through him.  He gets to say whatever he wants to say and I totally envy that!  He never has to hold his tongue and that must be amazing!

Oh, to be able to say whatever pops into my head without consequences!  Oh, Gordon Ramsay, I love you!

Monday, November 12, 2012

A love note to words

Words are magical.  Words conjure feelings.  Words can feel like an enchantment and words can feel like a malediction. 

Words can be tortuous when they are raw and visceral.  There are times when words cannot be delivered in any other manner.  Words can be polished and poised, full of confidence and as a result, cultivating a feeling of assurance in others.

They are heartrending at times.   The agony in the words can thicken the very air that we breathe with bitter sorrow and helplessness.    They are inspiring at other times, giving hope to those receiving those words.  We can feel motivated and supported, we can feel joyful and we can feel loved.

Words have the potential to disarm and placate but the potential also exists for words to incense and enrage.

Words can provide a feeling of connectedness and unity among those who share them but words left unsaid or unwritten or words full of apathy and indifference can create a schism which could prove to vast to navigate.

I can think of no better way to sum up how I feel about words than this:  I love words.  I know that "love" seems like a broad word with many different interpretations but it fits how I feel.  It's not fancy and the word "love" is thrown around so often that maybe it loses some of the meaning but it's the perfect word.