It's Not the End, It's Just a New Beginning...

Hello Everyone. Sorry for the long delay in posts from my part. I have had so much going on the past few months since Missie, Sarah and I started the blog, that I have literally spent more time hospitalized with no internet to post an update on my health Status. I have so many things to tell you about, but today I will leave you with just a little bit of mixed up feelings going through my mind at the moment.

Here it goes:
My body is on "Screw you" mode. I need a shirt with a line that reads "my body is trying to kill me".

After having an exhausting day, no sleep, I finally go to bed and then my body kicks in to gear and Lupus decides to get me up because the pain is so unbearable, just sobbing in silence will wake my husband. So, here I am, in pain, again, with a butterfly rash on my face, and its an evil rash hence its making the sides of my nose that hit my cheeks bleed.

Took Prednisone, to help in the meantime but that was 18 hours ago and nothing. Sometimes I wonder and ask my self, If having an auto immune disease has a reason behind it? What is that reason? It has been nearly 2 years since I got diagnosed, and even though I am fighting to keep up, as fast as the world is turning, my body is trying to slow me down, screaming that I can not in fact be that person I used to be.

They say, it takes one, to know one. I know many that hate the reminder of the disease that is tied up to my future hand and hand, and some might say that I live under the shadow of pain which is painfully true. But it was not my choice. I had a perfectly happy life before my walls came tumbling down. Not saying I ain't happy now; but it would definitely be much better if all this auto immune diseases, Lupus, Sjogrens, Raynauds, Osteopenia, CML, CHF, Cardiomyopathy and more were not in the picture.

This may sound like a vent. it is in a way but it's also a reminder for me of all the things that I have accomplished when every doctor had said I wouldn't make it past 7 months and it has been 20 months already.
It would be even much better, if I could reconcile some sleep on my own, or being able to sit outside for more than 30 minutes so I could enjoy the laughter of my children while they play on my green backyard.
But there again Lupus has decided that for me.

My body can only take so much, and unfortunately it's taking a beating since my old rheumatologist cut my chemotherapy treatments putting my life at risk of dying by doing so, just because I fired her, but that is a story for another day.
My body hates me. And there is no other way to put it. 
But my battle doesn't end with it trying to kill me.
It ends on my terms when I decide to open my eyes every morning if the pain has allowed me to get some sleep the night before, and putting my feet on the floor, to take a leap of faith in to the unknown and uncertainty of my new found day, even though it takes "Spoons" to actually do each and every little thing to keep me going, and that includes breathing because believe it or not, even breathing hurts when you have Lupus. (For the ones that don't know what I mean by 'SPOONS, look up "The Spoon Theory")

So, in the mean time, I remain, steadfast, hoping, wishing, and willing to move on one more day, if taking it one day at a time is what it takes, and even some times taking it 5 minutes at a time,and then starting those 5 minutes all over again.

You don't know how much you love and appreciate being healthy until that precious gift is gone, taken from you forever and your life, your fertility, your dreams, your goals in life, have been decided for you by other people.

That doesn't mean you stop dreaming. It only means you fight harder.
It means you dream bigger, You do the best you can with what you've got, and you try your best, because is better to know that you tried than you failed because you weren't brave enough to do it.

Don't let your dreams be just dreams someone said. And here I am. A wife for almost 10 years of THE most extraordinary man I have ever known, mother of 2 beautiful sons whose fingers have my heart wrapped around them, but nevertheless fighting the battle of my life, for survival, with endurance, lots of patience and out of pure love.
Because it doesn't end here.
Even when lots of people who knows me consider my life over.

I may not be ever able to have more children and give birth to a little girl my husband and I always dreamed of having, but I am lucky because the Lord blessed me by giving me 2 precious boys, and I won't deny it hurts a lot when other people say out loud in a derogatory way that I will NEVER have another baby, but I know that it would hurt me more, if I left my children motherless for trying to have another baby putting my life and hat baby's life at risk, which is a pretty selfish thing to do and by no means I intend to do that.

Because believe it or not, the day am no longer here and my husband decides to re-marry which is bound to happen if Lupus wins this battle, NO OTHER WOMAN, no matter how much she is said to love my kids, will EVER love my children more than I do or do a better job than me at raising them for that is MY responsibility and no one else's.

So, I fight. Steady, patient, in pain but vigilant that one day, relief will come and perhaps then, I will be able to look back at this dull days and smile and I will know that if I could get through this, I will be able to get through anything, because even in the worst time of my life, when I was defeated, and nearly dead, I chose to come back to fight, and get up, and not ever, not for once gave up hope because, if there's one thing I have learned, is that hope is the last thing one lose in life, not until the very end and your last breath anyways.

I may not be the same I was 2 years go before I got diagnosed with this terrible disease, but in a way I am stronger.
 I have seen death not once but TWICE, I have spoken and danced with it, and even then I fought to survive, to be, to love, to dream, to keep giving, to hope and to keep moving forward. I am in pain now, but I know wont hurt forever.
And although I have bad days, I also have good ones. Beautiful ones at that.

This disease, this pain and sorrow is a little inconvenience, a small rock on my road that was there to make me skip the path I was meant to follow, but it's also a simple reminder even that if it doesn't get any easier, doesn't mean it will be impossible to achieve.
There is always a reward at the other side of the shore after a long swim my mom used to say when I was little, and I know mine awaits!

Because I have seen worse and in my worst moments, when everyone thought I would be on my knees, defeated, with my arms and my head down without a sign of getting up, I did it, got up and put my boxer gloves on and decided to prove the world that I can fight Lupus and Leukemia like a girl!
So, It is NOT the end, but rather a new beginning, with a new perspective of things and with a different sight as of how to pursue this battle.
Keep fighting if you are walking on my shoes. You can do it just as I have so far. Jen aka Jmona PEACE OUT!