Hello my fellow Prednisone takers!
Hoping you’re sleeping but if not, I am here with you!
Being able to walk pain-free is a blessing. Being able to walk without showing the pain is a skill.
The pain can be excruciating, mood altering, and downright unbearable. Day’s like today, I get it. I get how someone is pushed to the brink. I get how someone normally so sane and logical can be pushed far beyond their limits and be anything but. Day’s like today, there are only minutes. I count the day in minutes. I made it through another 30 minutes without going home or without giving up. At the end of the day I am proud of myself, but to get there is no easy feat.
Life has been an interesting ride as of late. Diagnosed with steroid induced diabetes a couple of weeks back, I have been fending off sugar drops and rises like the most seasoned tennis player. Add to this insomnia and pure exhaustion, I have a pretty good idea of what induced this onslaught of body pain. None of that makes it any easier. Opening my eyes this morning the pain I felt, felt as though I was in a car accident. The exhaustion I felt, felt as though I had taken some form of sedative. Neither of which actually happened. Like us chronic illness warriors always seem to do, I pulled myself together as much as humanly possible and off to work.
One that does not live with a chronic illness may not understand what it takes. To walk to the copier, to type an email, to even sit for more than a few moments. It is all excruciating. Better yet, to wear clothing that is not loose is a mission. Day’s like today, I am proud of my chronic illness sisters and brothers on a different level. Day’s like today take more skill and determination than normal days. Unfortunately day’s like today often outweigh the “normal”.
So my fellow sisters and brothers on days like today and every day I am with you. I stand strong for you. Above all I wish we were all together to hug and hold one another. Because let’s be honest on days like today what I really need is a hug.
I am pretty sure at this rate I will reach some form of hysteria by midweek… I found myself laughing at the following pictures a little harder than I should have.
Another night, another tortuous night of rapid fire thoughts that seem to never end. I believe I have not only reviewed my life as a whole, but have caught up on my research and revised my life plan ten times over. I’ve also recreated my bucket list at least five times. Who is with me out there? What have you done? Have you designed the next breakthrough in modern science? I swear I am much smarter between the hours of 1-3am than I am during “normal” working hours.
On a not so funny note, due to what seems to be my new power hours my pain level and swelling are on the rise. My brain and body are betraying themselves yet again. I am so sorry to those of my fellow brothers and sisters that deal with this on a much grander scale then I am. May the beauty of sleep find us all… And soon!
There is nothing worse for me than a sleepless night. The tossing and turning, the hot and cold, the sweating, the shakes, the up to use the bathroom several times, the racing heart rate, oh and let’s not forget the straight up just not being able to close your eyes… Okay and the continual chanting in my mind “I will not snack, I WILL NOT SNACK!”
Love you prednisone!!
The fear ever real as the cold and lifeless room gave way to the pressure in my spine. As lifeless legs hang from the side of the table they roll me on my back. As the crew scurries around me never leaving me alone in the room but leaving me alone on a cold table with my thoughts. Will you be okay? How is it going to happen? How will I feel when I see your face? Are we taking you too soon? Or did we wait too long? Are you healthy? When will they bring mom in? My body begins to tremble, I am assured that this is a normal side effect of the spinal tap. The doctor pops her head in to let me know she is there and the room around me changes. In a blink of an eye the cloth goes up, the room becomes more populated, and the doctors come in.
Wait!!! There are two doctors. Why are there two doctors? My doctor introduces the “assisting” Dr., of which I know is actually a prominent obstetrician in the area. Then I hear mom’s voice and she is next to me keeping me still. Mom looks at me and tells me it will be okay. She sits close and holds my face and for a moment I have a renewed sense of strength. I will see you soon. The doctor lets me know they will begin and with trembling arms and my mother to my right I take pause in the moment. “Take a deep breath, here comes a lot of pressure”, she says. The hands on my face get tighter and the tears from her face pour on to mine. “Mom I am okay… It is going to be okay. He will be here soon.” With my fear ever consuming I resolved to never forget that moment. The moment only mothers knew. There was a silence that came over the room and suddenly a roar of a cry. Your cry! In that moment I knew you had arrived and you were safe.
My legacy was born!
My own mother next to me holding my face close as her daughter became a mother for the first time and she became what all amazing mothers can only hope for, she became grandmother (in our case an Abuela!). To my right I saw a glimpse of the beautiful face I had waited, hoped, and prayed for. Leaving my side my mother did what so many grandmothers do not get the chance to do. She cut the cord and held her grandson for the first time. Bringing him over to me for the first time, all three of us cried. I had my first very real moment as a mother. As my son cried, I spoke to him. I could not sit up and hold him. I could not hold him in my arms. I could not walk around with him at that moment. Nevertheless in that moment I spoke to him and offered him comfort. I said words to him that only he, my mother, and I will ever know. A moment shared by the three of us that no one can ever take. In that moment he touched my face and calmed and I vowed that I would be his fiercest protector, his safety net, his first love, and above all the best mother I can be.
On May 7, 2015 at 5:51PM Enzo Elijah graced the world with his presence.
It has taken me 2 months to introduce him to all of you, because I could not find the right words to express it all. Instead I resolved that I would never find just the right words to introduce him. So here he is, in all his glory. My world and my legacy!
I waited 10 long years for the honor of being a mother. The wait was worth it all. He hangs the moon and the stars for me. Motherhood is everything I imagined and more. It does not come without its difficulties but when I see that face in the low light of the darkness, I resolve in knowing there is nothing more pure in the world.
Here he is, isn’t he CUTE! 🙂
I have searched for the eject button on the recent path of my journey, to no avail. In the years since my diagnosis I have done what I always do, plow through, head held high, never looking back. As of late that methodology has not been as comforting. Life’s lemons are still sitting on my porch waiting to be made into it’s potent beverage. I have stared at them not quite understanding what to do with them, as my normal kick ass, straight forward approach has had me coming up drained and in the same place. Stagnant and drained are pretty substantial words to describe my current state of being. I have pondered and scoured for an answer to the “why” and it wasn’t until several days ago that I found the answer.
Let me be clear, my friendship with my chronic illnesses is nothing new. We are several years in and I thought that I had gotten a nice hold on them. What I wasn’t ready to admit to myself or the world around me was that, I no longer knew who I saw in the mirror. She looked familiar, she sounded familiar, but all in all not the same person. Really, it should have come as no surprise to me but it surly was. As I was in my beautiful world of deep cleaning and ridiculously loud music this week, the answer to the why was so very clear.
I no longer knew myself.
For someone that knew who she was and where she was going in life at a ridiculously young age this was a catastrophic blow. It all made sense though. The feeling of being lost and alone even when I was surrounded by the people that loved me most. The feeling of unease and uncertainty when I had the best support system someone could ask for. It all made perfect sense. When all you know is this semblance of a person that handles life with a vigorous fire that can never be snuffed, then you find yourself confused and depleted from life’s lemonade, you can’t help but feel shaken down. Right now, in my life I am getting a shake down. One day I woke up and I was in another body that had unimaginable pains, unclear thoughts from what could only be described as a foggy state, and a back bone that no longer stood straight. Who was this person? How did this happen?
Getting diagnosed wasn’t the hard part, reacquainting myself… well, with myself has been the most excruciating experience. Trying to do this while living life on life’s terms, well now your asking for too much. Having to work, be a wife, a daughter, and fuck it a productive member of society… All the while trying to understand what happened to you… Now that’s a damn epic mission. Nevertheless, I realized it and all of the missing pieces came together. I hadn’t realized that it was going to be a grieving process or even a process period. The vibrant woman was now a slower moving version of who she used to be. A more jaded and fatigued version of who she used to be. The woman that looks back at me in the mirror is tired, depleted, and honestly a little angry… Not the old me that was the fire spitting free spirit with endless energy. Can I place all of the blame on chronic illnesses? Well sure I can but that’s not who I am. I take responsibility for my actions and my part in the situation. I could have done more about my illnesses. I could have done some more soul searching. In the end, I won’t look back at what I could have done, to me thats a waste of perfectly good brain cells that I should preserve for days that the brain fog sets in.
So where do I go from here I asked myself. Well to the beach of course! So I find myself at the beach, searching for answers to questions I thought I already had the answers to. I am searching for answers and way to steer this new way of life for me. To figure out how to still be that firecracker powerhouse that is determined to teach the world all the while possessing a body that does not match the soul.
What I have come to realize in all of this is, this is normal guys. I am no different than anyone going through any struggle. It is real, it is normal, and it is going to be O.K. Now I just need to find sticky notes to help with the brain fog and some great heels!
Until Next Time.
I am in the home stretch of my senior year in college and part of that consists of doing a major research project. I need a sample of 100 people to take this survey. The survey is 4 questions and is CONFIDENTIAL!
** For the sake of the validity of my research, I can not discuss my findings or the hypothesis at this time. **
If you have just a moment your participations is truly appreciated!