Lost

It’s been a very long time since I’ve written anything. This isn’t because I’ve lost my love of writing, but more, I’ve lost my words. It’s extremely frustrating to have things to say, to share, and not have the words to actually do that. 

Along with this disease destroying my body, it also destroys my mind, my words. My entire life, the only dream that has been consistent is my dream of being a writer. To have this disease systematically destroy that too is crushing to my very being. It takes my mind a long to to process anything lately and even longer to come up with simple words. To be a writer, you need to convey emotions, smells, people, with only words. To have those simple words escape me is something I can’t seem to get over. 

Just writing two paragraphs, two simple paragraphs, has taken many long pauses and lots of frustration. Still, I can’t seem to find the real words I want to use, so I’m forced to use whatever simple words come through my mind’s foggy haze. 

Writing used to be my escape from reality, it was fairly easy and fun. I was never one to sit and write rough drafts or notes. I’ve always just had words flow out. This is new, this lack of words, and it’s not all that fun. I could probably continue to write on my blog, but it’s not as joyful as it once was. 

What I’ve learned in the last several years is this disease strips you of everything you knew from the inside out. I’m mearly a shell of the person that I used to be. I’ve always had a pretty positive outlook on things and even found positives to having this disease. That optimism has waned significantly in the past year. It’s been a struggle to keep my head above water with the everyday things, much less things I used to enjoy just for myself. 

This may be just a pity party rant as I’m sitting at home while my family is at a World Series party without me. As with everything, I’m sure I will look back on this as a low point before getting back to my optimistic self. Right now though, I can’t really see my way out of this hazy fog that is my body and mind.  I’m hoping that the fog will soon lift enough for me to see the light. 

Does this post even make sense?  Yea, I’m not so sure. But, that’s ok because nothing about my life with lupus has made sense, though I’m looking forward to the day when it does and I’m able to see the light through this haze. 

PSA #3-No Regrets

On the eve of what will be an emotional day for us, I can’t help but think of all the good memories shared. As we say goodbye to Hubby’s Mom tomorrow, I’m reminded that tomorrow is not guaranteed. We didn’t see this coming, not this soon. 

As someone with Lupus, it’s often hard to do things. Life gets crazy, I hurt, and often I’m unable to hide my frustration. What I don’t want is a life, hell a day, of regrets. Life is short for us, especially those of us with an incurable disease. We need to make sure we really live our lives. Even if that just means having some cuddle time in bed when we are out of commission. 

I don’t want to leave anything unsaid or undone. Live each day to it’s fullest; whatever that may mean to each of us. We only get this one shot, let’s not waste it on regret. 

Live, laugh, love…you are loved and you are at peace mom; watch over your family from above. 

XO-Lupiemomma

PSA #2-Be Badass

I planned to write a PSA everyday this month, but things haven’t gone quite as planned. We have had rather unexpected tragedy happen which has thrown us all into a whirlwind of emotions. But I’m going to keep on as much as I can. So…

Be badass!  After a day like today my old self would never look back and think “yup, I was badass today”.  My updated chronic illness self has redefined badass. 

These days, badass has a different meaning everyday. Days like today, badass simply means, yup, I survived the day. Some days it means I got my house cleaned. Some days it means, I didn’t kill anyone. Others it means, I went an hour not thinking of pain. 

Badass means something different to everyone, on any given day. But, to those of us with lupus or any chronic illness it means we didn’t give up. No matter what life or our illness threw at us, we kept on keeping on.

Now, that’s what I call badass!  And lemme tell you, us lupus warriors are badass. 

Lupus Awareness

Boy did I drop the ball on Lupus Awareness. I guess it’s only fitting for me to have a major flare during May (which is lupus awareness month). I’ve been down and out, which means no posting. I’ll try to get my ass in gear and get some blogs out about this invisible disease. 

PSA #1- Just because a person doesn’t look sick, don’t assume they are fine. That might be one of the hardest parts to a disease like this. We don’t look sick, so we just look like we are being an asshole for no reason. We try our best to look at the positive, but sometimes that just doesn’t happen. Bear with us, it’s usually a short lived pity party. 

Ok, carry on, I’ll post PSA #2 tomorrow. 

XO-Lupiemomma 

 

Blessing in Disguise

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About 2 years ago my life changed in a big way.  I was on my way to  coffee with my friend.  It was a stressful day and Sara decided to drive.  Clearly that was God’s plan.  Shortly after leaving my house I felt odd.  I don’t remember anything after that.  Apparently, I had what they used to call a grand mal seizure, but now it’s known as a generalized tonic clonic seizure.  I’ve never had a seizure before, I didn’t even realize I had one then.  In fact, I have no memory of it at all.  The only things I know are what those who were there have told me.  Sara came to a screeching halt in the car when she spotted a police car.  Funny enough, she forgot to put the car in park when she jumped out, so she almost killed me in the process of trying to save me!

An ambulance was called, Todd was called and I still have no memory of any of this.  I came to at some point and was apparently still somewhat out of it since I was asking for help, fighting the EMT’s as they tried to get me in the ambulance.  While I may have been talking, I was not conscious at this point.  I know all of this from Sara and Todd.  This part of the story is difficult for me because at this point, my kids were in the car with Todd watching me being put into an ambulance.  That’s not something I ever want them to see again.

On the way to the hospital, I did finally regain consciousness.  I remember looking around the ambulance and asking where I was and who they were.  I have many gaps in my memories from this point on.  I remember parts of the Er, I remember parts of being in the hospital over night.  But there are many things that I don’t recall.  I’m guessing it’s the brain’s way of protecting me.

We called my Rheumy who sent me to the neurologist she works with.  He looked at my EEG from the hospital and confirmed the grand mal.  I had a lot of activity and was not on a high enough dosage of my seizure meds.  He upped the dosage, but I was not allowed to drive for over a month.  Yikes!  We somehow made that work for our family with the help of a lot of good friends.

While my life changed dramatically after the seizure, it was really a blessing in disguise.  That seizure was the last piece of the puzzle to my disease.  After the seizure, I finally got my diagnosis of lupus.  I finally had answers.  I never thought I would be so happy to have something so major.  But, with a diagnosis comes treatment.

While I haven’t had another clonic tonic seizure, I have started having breakthrough seizures for some time now.  This type of seizure is called Myoclonic seizures. They are like having sudden twitches, similar to what people have just before they fall asleep.  Only mine happen while awake and randomly.  While they are annoying, they are a bit amusing as well.  I have gotten some double takes from people when my arm suddenly flies out or it looks like my leg is kicking some imaginary football.  If I didn’t have memory issues, it would be totally amusing.  But, we do get many chuckles from my “spasms” at work.

So, while this was never a disease I thought I would be dealing with, I’m thankful for it.  It was the missing piece my doctor had been looking for.  Without it, I could still be without a diagnosis and still be trying the wrong treatments for me.

I’ve been putting a lot of effort into trying to be more positive. It’s not always easy to do with chronic illness and chronic pain, but without it you get stuck in a dark hole by yourself.  No one can live in that dark hole for very long.  So, I have been trying to find the bright side as often as I can.  So, we laugh when I look ridiculous and we hopefully get some answers when I see my neurologist in a little over a month.  Until then, we just try to stick to laughter and look on the bright side of things.