Today I am going to go back to my health for a moment. As always the rollercoaster continues.
Despite my history suggesting rheumatic disorders multiple times, when I was tested it did not show that when I finally made it to a rheumatologist. Given that I was being treated with prednisone this is likely the reason why so I have to wait and get retested. However, I did get slapped with a new issue. I was diagnosed with Fibromyalgia, and started a new medication called Lyrica.
Second to this…I have become increasingly worried about my kidneys. I see my nephrologist very soon which I am glad for, he had me do a new 24 hour urine collection since I have hematuria and proteinuria (for those who aren’t aware that is protein and blood in your urine, both bad things.) My blood pressure has also been spiking and my vitamin D has been incredibly low.
I barely got 30 ounces out in 24 hours.
This alongside the fact that my filtration rate in March had dropped to 72 scares me. I am nervous as to what I will find when I go to my appointment. My rheumatology clinic has also requested I push my nephrologist to do a biopsy. Something he really does not want to do since my condition is so unstable and my illnesses so largely unknown at the current moment.
It seems that no matter which way I turn my life is short. Too short, and painful. Some days are easier than others, some days I find myself fighting my own body to move.
I am twenty nine years old and I own a cane and a wheelchair. I have a handicapped tag for my car. These are not things I am proud of. I hate them infact. I cannot remember what it is like to be free of pain anymore. What makes me sad? I will probably never know what it is like to feel as though I am not a burden on my husband or family.
No matter how much they say it, and want me to feel I am not. I still feel I am, and probably always will.
But what makes me saddest of all? I will not have as much time as I want with my family, my husband, my son.
I am a ticking clock. I know this, and I am powerless to stop it.
I will spend the rest of my life knowing that I cannot get any of the precious seconds back that I have wasted on this or that. Standing in the line at the checkout, driving from place to place, the mundane details, or even all the time I have had to wait to find out what really is wrong over all. The whole time my kidneys get a little weaker, my body fails a little more. More damage that cannot be repaired.
My time here is so incredibly precious. I am ever mindful of this fact.
I bleed, I pine, I burn for things that I cannot ever have, better health, a body that works properly, the ability to have another child, better still, the ability to be a healthy mother for the child I have, and my wonderful husband.
Hold on to this life, it truly is the only one we get. I spend my every day trying to remind myself that I am writing my story and painting my world, and one day I’ll be gone, and it so important that I relish the moments I have, and drink them in like a tonic. Breathe it like it could give me the time I crave so desperately.
If love could extend your life, the love of my family would keep me alive for hundreds of years.
I have added more vocal covers to my youtube channel and here is one of my more recent ones.