Well first off Let me start out by saying.....You are in for a ride. This is not going to be easy. And I of all people truly understand.
When I landed myself in the ER on February 11th of 2014. I had no idea the changes that where going to end up coming in the future of my life. What I did know right there and then. Is that I was felling completely helpless & my body was out of control.
For the Months to come, I spent time with many drs....that just point blank had no Idea what they were doing. Not because they weren't good DRs but because they didn't understand all the Chronic Condtions I was fighting. Two of them being Postural Orthostatic Tacyhcardia Syndrome & Dysautonomia. Which those of you fimilar know that this just pretty much in a nut shell means our bodies do crazy things with no warning or cause. I also have other condtions that I have found through out my journey which makes it even more complicated. But I always was the firecraker of the family..lol jk Ok I know not really funny but truly I prefer to laugh, it beats Crying right!
So serisously, After dealing with this for months and being diagnosed but given no direction of how to help myself or pretty much anything for that matter. I found myself in a deep dark place. I was not suicidal. But inside me I was feeling worthless... Thinking that my family would be better with me dead for then they could atleast not have the finanical burden I had given to them. I know you are probably reading this saying.... OMG TARA!! ( especially for those of you that know me best) For I have always been a girl fulll of love & life...with a bit of a crazy fun side & a dash of sass lol.
But this time I felt as it was more than I could bare. I was defeated in every part of my life. My free will to live the life I thought I was supposed to was gone. I wasn't able to return to my job that I loved at the hospital that I was there for 10 years. I wasn't able to care for my babies the way I wanted to. My husband was staring into my brown eyes everyday & I could feel his heart ache. He was watching me deteriorate day by day. I was waking up everyday...thinking here we go this is it.......
But, then I started digging deep.... finding my own . If these Drs around here couldnt help me....there had to be someone that could. I understand there is no cure....but the comfort of spending time with a DR that truly understands all you conditions, I knew so how I would find this to be comforting.
Enough Was Enough!!!! I had it with feeling sorry for myself. I needed to find ways to help me get back to me....... So it was time to get my life back the best ways I could.
So I began to focus on the things I could control daily..... Ok .... So I can Control what I eat, drink & do to my body.
-So I started working in daily exercise ....Ya hardest thing ever peeps #truestory! For those of you that have pots know what I am talking about.
-I began eating a healthier balanced diet which I refer to as CLEAN EATING.
- I began to only surround myself with positive cultured people in my life & limit the ones that brought the most stress to my life ( I don't me that to sound rude but its true)
So let it go.... this takes much practice of course. I have learned the ones in my life that do and do not understand. But I have learned to not take it personally. I know its hard to understand , Hell half days I don't understand it my self.
But for the ones that must know some of the things that drive me the most crazy that I hear people say to someone with a chronic illness.... IS THIS!!!
-MAYBE IF YOU EXERCISE MORE AND LOSE MORE WEIGHT YOU WILL BE ALL BETTER!
-YOU DON'T LOOK SICK!
-MAYBE YOU JUST NEED REST!
-YOU ARE SO DRAMATIC!
-ISN'T THERE SOME SUPPLEMENT OR MEDICINE THAT CAN MAKE YOU ALL BETTER?
-YOU JUST NEED TO GET OUT OF THE HOUSE MORE!
BLAH BLAH BLAH!!!! You can never know what it's like to walk in someones shoes until you are there. I can listen and be here to relate. But just as I don't know what someone is thinking , feeling or going through daily.
So to people like that In my life I always respond with this when they ask how I have been feeling? or how are you?
Depending if I am in a sassy mood or not lol
Somedays I respond... " Nah I am just acting like I am ok , please don't interupt me." Or I just day " Oh I am doing good."
I have found through my personal journey some just can't handle to hear the truth or they just can't make sense of it all...How you look ok....and maybe one day you seem really good but the next really bad.
Well those of us that have dysautonomia know that all days are different & we can't predict it either.
So where do we go from here.....
Everything with me really help me starting a new chapter in my life. Letting go what I thought my life was supposed to be and start creating a new one that will be. I know I made that sound really easy and please don't misunderstand its not at all.
But by letting go of what we can't do and focusing on what we can. This is a entirely new playing feild for those of us with chronic illness.
I began reading personal development everyday! This are 2 of my favorites that truly helped.
I had to fight!!! I wanted these two beautiful babies watching mama everyday to know I didn't give up. And even though I can't do things as fast as I once could or maybe as long....that I could still offer them a priceless gift with lasting memories....Me & my time... embracing things together big or small.
I still had the power within me to be the best mama I could be. But I had to let go of all that negativetly and worthless feeling inside. For I didn't want that to rub off onto them.
Being my own advocate & finding a supportive Dr Was half the battle. I found Dr. Blair Grubb & his PA Beverly & even though there is no cure. I know I am in the hands of the care of Drs who truly care about me & truly understand what my body is going through, I have yet to this day to find a medication to help. I am so allergic to so many things now. The best thing for me to do personally is eat right at least 80% of the time , which still to this day is very difficult but I just fit my daily exercise in the time of the day that I know I can , I get a ton of water in , & I personally drink protein shakes when I can’t eat regular food.
I am very blessed to be in a strong marriage that even though times are still really hard. My hubby has stood by me and supported me . Even on those days that I lash out at him for I am feeling so defeated by my day. But we still try to make everything fun and focus on the positive happy things in our life. We work as a team. He still has time that I feel he doesn't truly understand but I must remind my self that he is not a mind reader and I have to keep that communcation open when I hit that time of the day that all the energy is gone.
That was my biggest thing to overcome.... to stop setting myself up for failure. I needed to start prioritizing my day & understand that life was about to become a but unpredictable. But then the more I thoughts about it . I am kinda a unprediciable fun gal so I can do this.
BUT I HAD TO STOP THINKING I COULD DO IT ALL!!! FOR I COULDN'T !!! There was no failure in that . It's the truth . When I wake up I litterally have so much energy in my day but its up to me how I am going to choose to spent it. If I am spending it on the things that truly bring joy to my life & focusing on still setting goals & dreaming . It will all work out.
I have found myself. I am not broken. I just somehow have to make these lemons that where given to me into champaine....And I know I can. Days can be very very hard. I still have days that I cry it out. The one day this week I fainted 5 times in the morning, could't even take my little man to preschool. I was feeling extremely defeated . So my hubby helped out in the even and I just did what I could through out the day. My kids are so helpful & do know mama is sick. But I don't tell them too much and now I am so glad I don't for my baby girl has been diagnosed with dysautonomia too....
This news was heart breaking for me. But thankfully so far things seem to be alot milder than mine but I have to know in my heart that who better to walk through this journey with her than her mama. The one who loves her the most & knows what its like.
I will never ever give up. Even if there is no cure. I will not give up on the fact that I have the choice to decide to make the best out of my life, I want my babies to know that too. We all can have a happy life. Its up to us to create it.
We are not broken we are going to have to deal with things in life different
....YES!!! But we can!!! Once I was able to wrap my mind around everything that I am going to have to face and deal with it head on. Thats when I found my courage & Strength.... Strength to not sweat the small things & Courage to wake up everyday to know that I do have something very beatiful & special to bring to this life.
So I leave you with this... Take the challenge to know that you can & will even with the hard days , hours...... you will learn to laugh, cry , love and support through it all. I am still learning everyday not to set my self up for failure & know that its ok to not be ok ....even when you feel like no one understands. You will never make the world understand for we are all different which is a beatiful thing.... But we all have something beautiful to offer this life & the lives of the others we are so blessed to touch.
Stay strong, Have Courage , Don't be afraid to share your weakness, & keep that smile shining bright even if you are laying down having a rough day doing it!!!!
I hope this helped someone today. For none of us are ever alone...please know that !!!