Friday, September 6, 2013

Some Things About Myself I'd like People to Know...

You may want to settle in a minute, I'm not sure.  I don't know if I'll become emotionally exhausted halfway through and have to stop, of if it will be one of those posts that makes people wonder if my shrink needs to adjust my meds.  Either way, I'm having  a REALLY hard time this last week, and the week before.  It seems like everyone and everything has its or their own way of doing things and that within the year we've all been here together we'd have become accustomed to each others idiosyncratic behaviours.  My mother lives here FFS, I've known the woman my whole life, I know how she is.



Nothing has gone as it was planned at all.  Everyone still gets on everyone's nerves.  The animals here that were supposed to be shared duty have turned into making my 17 year old the king of shit clean up for animals that do not belong to him.  He is left picking up slack that literally no one else here will.  My husband doesn't understand you can't do housework once and it's just permanently done, it's a perpetual job.  How the fuck did he think he always came home to a spotless house and clean kids and done laundry and food on the stove ready for a hot dinner when he walked in?  He never thought about it, it's just what happened and he was happy with that.

He's not an asshole for the most parts.  Don't delude yourself though, he's not a saint either, he's got some real dick moves that he has perfected, but that's not what I came to write about today.  We've been married for closer to 20 years than we haven't.  He does what he can for me when he doesn't have his blinders on, but for his own protection, he put those blinders on many years ago.  I bet I'd wear blinders too if I were him.

I have a lot of things wrong with me.  When the journey began, he saw a skinny, pretty girl that had gotten her gallbladder removed and had an asshole boyfriend that left her in a lurch. I wasn't supposed to be pregnant anyway, but through that, while I was carrying a child that did not belong to him and he knew it, he was kind to me.  He was patient, he took care of me if I got sick, and treated me like no one else ever had.

Our budding relationship weathered the early storms, an easy delivery, another pregnancy and an easy delivery but a complication with the child. He was still right there, my partner in it all.  As those 2 children grew, we moved on with life. Working to make ends meet, to make a nice Christmas, those kinds of things.

When I moved to a colder climate, some of the aches and pains I'd had as a kid that were blown off by my parents as nothing more than "growing pains" came back with a vengeance.  I started to see doctors and get opinions and have tests. They thought I had lupus, they thought I might have leukemia, they ran test after test after test and I was so grateful for insurance it was crazy.  The only diagnosis I got at that time was Fibromyalgia. Here's what the Mayo Clinic says about Fibromyalgia.




The following year near Christmas, I was at a stop light and the person behind me didn't feel like I moved fast enough so he rammed the back of my station wagon and moved it 12 feet while I had my foot on the brake.  I hurt my neck (fractured my c4 to be exact) and I had hit my mouth on the steering wheel and fucked up my teeth terribly and permanently.

Time moves on, and I'm involved in yet another car accident that leaves my neck and back very sore and my shoulders messed up as well, but I'd declined medical care due to lack of insurance so I'm not sure what the true damage at the time was, but we know now that at some point in time I've damaged several other vertebrae in literally every region of my back from cervical to sacral. All regions have vertebrae with bone spurs encroaching on the nerves.

Fast forward to Maxwell being born and that wonderful birth was amazing, all of it, except that I hemorrhaged and had to have the doctor reach his entire arm into me to remove all the pieces of the placenta that had attached to me.  It was a rough delivery.  I was unaware that I would be able to conceive after little MacKenzie Zane's dramatic entrance into my life.  So unaware that upon release, I was asked to make an appointment to have a tubal ligation done and the sooner, the better.  I made the appointment, but I never could go to it.  I just couldn't.  I knew I shouldn't have more children.  I knew I should be done.  But in my heart, I didn't want to be.  So I just never had it done.

The older Max got, the more tired and just plain shitty I felt, so I kept going to my PCP thinking something was off, hormones, thyroid, whatever.  He blamed it on the fibro and told me to get more sleep (with fibro and a newborn? yeah right!).  I thought I should get a second opinion but before I got a chance to, I ended up lights and sirens in the back of an ambulance to get an angioplasty and a diagnosis of congestive heart failure with an ejection fraction of about 30. Normal is over 50.  I was in there for 5 days that first time.  Within a few weeks, I had another episode where I fainted in the living room with no one but my then 2 year old to help me. Thankfully, I didn't die and his dad pulled up outside seconds later.  That landed me all the way down in Los Angeles at Good Sam Medical Center having an ICD put in.  And one more diagnosis. Brugada Syndrome. Here is some information on Brugada Syndrome.

Shall we go over the basics at this point? Fybromialgia, Congestive Heart Failure, Brugada Syndrome, a fractured c4 healed poorly and pinching nerves, scoliosis that was not treated in childhood because my parents didn't put me in the reccomended brace and a seriously fucked up spine due to bone spurs all up and down.  I haven't even begun to tell you all what is wrong with me really, there IS even more.  I have inflammatory bowel disease as well, that's not a pleasant one.  I have a ton and a half of anxiety issues (none of which are HYPOCHONDRIA) but I've been checked for that too.  I talk about this all the time because these things are all a big part of my life, but more than that....no one sees me as anything else anymore.  "oh its that sick girl that complains all the time".  Yep, that's me.  My reality anymore isn't "it's the sick girl" at all, it's the "it's that girl that complains all the time".  Because what you DON'T SEE is that I do try to put on a brave face when I can.  When the mask is there I use it, but sometimes, the energy I would otherwise use as a mask to hide the pain and the shitty way I feel is busy being used up breathing.  Living.  Surviving it all.

After Memphis was born, I got so sick I should have died. I was within days of it. One of the chambers of my heart altogether stopped working.  They got my bi-vent pacemaker in just in time according to my doctors.  I AM better now, but I've now cycled into something digestive and lost almost 100 pounds total since his birth.

Now I know that there are people out there that have it worse off, but c'mon now, you can't begin to tell me that you know for a fact that I don't respect the hell out of them because I complain.  Because I do.  I also know that there are folks out there that have it easier that make themselves out to have it worse.  But that's just the way of the world, human nature if you will.  I'm flawed.  I'm sick.  I'm not who I appear to be.

                                    


I LOOK TOO HEALTHY TO BE THIS SICK and that is a disadvantage to me.  How or why you may ask?  Well, it's the glances sideways and the mutters under the breath when you see me using the scooter at the grocery store.  It's the rude comments you make when I park in a handicapped spot on a bad day when I can't breathe or can't move properly.  It's the doctor in the Emergency Room that decides that because my color is ok and my troponins are negative that he shouldn't bother to look for anything else and sends me home to almost die again an hour later.  This shit happens ALL THE TIME.

I've just become tired of it happening to me.  I'm tired of being treated one way when I'm just as much a victim to their treatment as I am my own body.  I did not wake up one morning and decide to become this person.  But maybe I'll wake up tomorrow and decide not to be. Maybe, I'll get healthy again, and maybe unicorns will dance on my roof at midnight during a fool moon ;)
Until next time...
J

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