Learning to Breathe

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I wonder if I’ll ever fully develop a good sense of self or ability to function.

If any of you have followed me for a while you know that I am incredibly hard on myself. Literally no matter what I do I’m always over analyzing what it is that I’ve done and if I made the correct choice, and also if what I’m doing at that current time is the correct thing. I honestly never know if I’m doing the right thing or if BEING ME is enough. Hell I think the only time I felt semi secure was when I was in therapy over the last six months or so, and my therapist has since quit and I haven’t been able to see her in the last few months, so I don’t have her anymore/a therapist at all. Right now though for the first time in my life I feel happy but so scared. I have plans but I’m SO NERVOUS. I am on the brink of so many things that I have wanted for so long but I initiated so many changes directly before all those things. It’s mildly terrifying.

I am placing an enormous amount of trust in the people around me. Some have absolutely earned it. Others have not. I have so much legal work to do it is legitimately overwhelming me and I don’t even know where to start. I’m watching everything happen and time is running away from me. It’s all happening so fast and I just hope and pray I can keep up with everything. Even thinking of it all gives me the feeling I get when I’m around too many people and I want to explode and disappear at the same time.

I know this. I need to reach out for help more now that I have that. I am so used to taking everything on my shoulders that I forget I can lighten my load. It really is as simple as just asking. I have always had to be the one in control. I don’t need to do that at all. Quite frankly I’m better off if I don’t. I have a partner who shares responsibilities with me. I forget about the strong girl inside of me. When my body is full of weakness, it’s easy to lose sight of the strength I do posses.

I really feel like in some respects I’ve spent the last three years alone. So it’s a shock, albeit a wonderful one, to have someone to lean on regularly, and a partner to count on. The last few months have been wonderful, but also tiring. I’m glad for some events to have passed. I would say my life is beginning, but that’s not true. My life is a wonderful and amazing tapestry of positive and negative choices I’ve made and experiences I’ve had that have brought me to this point in my life. Despite it all, pain, hardship, damage to my self worth, and divorce, I still wouldn’t change a thing as always. I learned a lot and it has brought me to this moment in my life.

Expect more blogs, and possibly more Vlogs as well. I’d really like to start doing that again. I want to look into getting a good digital camera if anyone has any suggestions feel free to chime in.

Until next time darlings,

Shari

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Much Germs, So Yuck!

So the video is live, Alex has a bacterial infection surprise, surprise, because sickness always runs rampant in this house. Took him to the doctor who was AMAZING. This guy took the time to earn his trust. Alex even opened his mouth and showed his ears to him. He gave the doctor a hug at the end, which is not something he does with people. Affection is not his thing having ASD.

I’ve decided to switch doctors to the one we saw. He versed me better in the short visit with him than the two doctors I’ve seen in the last two years have. There is a lot going on with me but I will save that for another day. For now I’ll just say there may be some serious items on the horizon for me and my own health some of it having to do with my thyroid issues that cropped up in 2015 around Christmas for those of you that have been long time readers. That is never anything new though.

 

This brokenness inside me might start healing…

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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.