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.

 

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I hear voices all the time…

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What is it that defines us? Who we are and the choices we make? We all have paths in life. Roads we travel down, sometimes dirty, rocky, or even muddy. Other times we are met with smooth pavement under the tires. I feel we all are presented with obstacles and detours and how we decide to handle that is part of what it is that writes the ultimate biography of us. Who we are and the nuances of our personality.

I like to think that I am a strong person, one who has not only been off-road, but lost with a broken axel and busted mud tires more times than I would ever want to admit, even to myself. Every time I have found my way back to life. I mend the frame and drive on. Much like an old beat up Dodge that has seen better days but still runs and drives, I am here. Despite the fact that this old diesel engine is a bit knocky and tired.

I know I know, that is a lot of parallels to roads and trucks, but this is me we are talking about.

Lately I have had the voices of those around me, those who are so important, in my head. I have had a lot of things on my mind as well as many challenges to face. It has brought to the forefront some people around me who I don’t think will ever change. It has also reminded me that I do have the support of a few people that I could never trade. My wonderful husband, my amazing sister and brother-in-law, and even, at times, my grandparents down south. Though my phone calls to them are often short, and somewhat cooky, I will always be thankful for my grandmother and her silly southern love. I will never forget how much love I have been given from them over the years. My sister is a driving force in my world, I am ever thankful for technology and the ability to keep up with her every day when we cannot see each other.

I may not be perfect, and I have certainly been through a lot. I have become so much more aware of the truth in the world, and about people.

So what is it that makes us who we are? Is it those around us? The things we see? The way we were raised? I believe it is in the choices we make every day. You are who you choose to be. If you want to get back on the pavement, you need only turn the wheel, and start getting out of the mud.

All my friends are heathens, take it slow…

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I’m not exactly anyone’s idea of a “lady”. I’m not going to say I every really tried to be. I was always the one who avoided the color pink like the plague as a child and swore off dresses. I was climbing trees with and riding bikes with the boys.

I had a conversation with an old friend, Richelle today. It was a short catch up and chit chat about random things in which purses and shoes came up. Little known fact, I have become an incredibly large shoe addict. I am going to confess it outright I have fallen into this guilty catagory now. I have more shoes than I have room for or occasions in which to wear them to. When we buy our home, which we are shooting for hopefully next year, we are going to honestly have to plan for a larger closet to accommodate my clothes and shoes now lol.  I also have a hard time passing up a good deal on a new pair even though I have so many lol. I’ve also noticed that I’ve taken up more girly hobbies as of late. I certainly use makeup more often, I regularly carry an ACTUAL purse instead of one of those crossbody bags that barely passes for one, and find myself shopping for multiple ones as a guilty pleasure. I wear skirts and dresses and love it. I enjoy accesories and have an extensive collection of girly things. I mentioned that I even have a pair of tennis shoes that are primarily pink now. She flattered me by saying that I was most certainly girly, if not adorable in our younger years anyway.

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As you can see my style was quite that of I LIVE IN JEANS AND TANK TOPS, throw in a hoodie for good measure and a t-shirt here and there with a band on it and you had my style lol. The other picture is from today. I’d like to say I’ve grown up, and changed, while I still wear t-shirts of course I’m not exactly what I was back then. I am pretty sure my face is stuck in some time warp, because I still look like a baby LOL. I’ll take it for as long as my body decides to let me keep it. I may be falling apart on the inside but I still look eighteen sooo, eat that chronic illnesses! ❤

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This did get me to thinking about something else, as today marked a very important day, as did yesterday, in my personal history, as well as our national history.

How often do we realize what we mean to others? I spent so much time of my life worrying about others accepting me, saying the right thing, doing the right thing. I was always so incredibly insecure and awkward. Afraid of losing those around me. So very few of the people around me even knew that but I was so afraid of them turning on me or their friendships with me being conditional that I was fearful of getting truly close to anyone, and in some cases I still am. I stopped to ponder today if some of those around me back then ever felt the same. Maybe I was one of those people to them? Maybe I was the one they looked up to? Maybe, just maybe I was one in their life whose opinion really mattered to them.

I feel like a lot of us let our insecurities hold us back, from wearing what we want, talking to those around us, or letting in people. You never know. You could be someone’s inspiration, or foundation. That friend you are so scared to lose because you are afraid of their opinion, simply because you think so highly of them? You may be that person to them. Never underestimate what you mean to someone. Live life with as little fear as possible. Go out and reach for the things you want. I am thankful for my husband Zane because I spent a large portion of my life surrounded by people who told me I couldn’t or shouldn’t do things because I was “too short” or “not quite in shape enough” or “couldn’t pull it off” and I let it hold me back from things that were really part of me anyway.

For the first time in my life I am starting to experience it unbridled. I try very hard to keep my fear of rejection or judgement in check, and do what I feel happy doing, so long as I am not hurting anyone else in the process, or myself. Honestly? We only get one spin on this Earth, and mine may very well be a short one. I want to show my son Alexandr he shouldn’t be afraid to be himself, and I never want to regret the things I didn’t try or do, the people I didn’t let in, or that I wasn’t there for.

Also, have a song, because it’s stuck in my friggin’ head.

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.

 

Don’t hold a grudge or a chip and here’s why…

I know you got mountains to climb, but, always stay humble and kind….

So many things have happened since my birthday a few short months ago, and it’s almost too much to catalog. I can’t even really go through it all, but suffice it to say, between multiple trips to the hospital, a stint in ICU, and in general more health issues than I care to admit to myself, I seem to have stabilized somewhat. Toward the end of this month I finally make my way to the Rheumatologist I have been waiting to see since last year. With any luck this will get us some more real answers, unfortunately it may create more hiccups.

There have been plenty of new developments, Zane came home for multiple months, and is now back on the road again, back to doing what he’s always been good at 😉 I know he’s married to me, but that blacktop is his second home, and I’m okay with that. There has been so much more that’s happened and I could go on forever about everything that’s developed over the last few months. Let’s just say I see so much coming on the horizon. I will meet it all with my head held high as I always have, and with my hand held by those whom I love. Zane has been such a driving force for me this last year and I can’t believe how much I have changed being with him.

They say the world and the people in it can change you, and that’s certainly true. I think he has changed me more than he will ever know, but more than that he’s helped me find me again. It’s like settling back into the earth that I once was. I’m comfortable in my own skin again. I don’t feel like I have to pretend to be someone I’m not. No need to impress or keep appearances for anyone. I can be as raw as I feel I truly am. I can sob and let my emotions as free as they are. If I honestly cannot handle the day and the cross I bear is to heavy, he will take it off of me and hold it for as long as I need, and hold me in the meanwhile. Even from hundreds of miles away. I have never met someone so kind and gentle, nor someone so caring. I cannot ever see myself anywhere else than in this life.

Everything lately has been so heavy on me too, there has been so much difficulty, so much sickness and pain, one bit of bad news after another. One unanswered question after another. I feel like it’s a constant spiral some days.

Alexandr continues to be my guiding light though, every day I awake to his sweet smile and “Hi!” I get to look into his beautiful face and get kisses and hugs, I play cars and teach him things, he puts bugs in my lap and we play in the dirt. I spend too much time in the sun, and I wouldn’t trade and ounce of it.

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I really do wish I could see the world through his eyes, the wonder he must feel at every little thing he sees. He has been making great progress in therapy, his favorite color is orange and he is doing great at saying them now. He can now say “Juice, eat, and bite” he knows what they all mean and uses them respectively to get what he wants. He also says “Thank you” and “Hi” he is starting to call me “Moma” on occasion, which is rare, but just about makes me cry when it does happen. We had a regression of his verbal skills early on and “mama” dropped from his vocabulary completely after being around for a very short time, since then he has not referred to me by a word at all. I’m very touched he is starting to use it again and I cherish it when I hear it. Sometimes it wears on me with how hard I work to not hear it. I love him so very very much, he is my everything, my soul even in some ways. To have him not say things like “love you” or “momma” is hard sometimes. I know that some people who have children who are somewhat non verbal, autism spectrum, or special needs will understand this. It can be difficult when they cannot reach out to you through words.

I try to remind myself that it’s not my fault, nor is it his. It may never be his way, and that is okay. I know that he loves me, and appreciates me. So when he does hug me, or kiss me, I just appreciate it that much more. I also do not scold myself for feeling jealous or upset when I sit at the park and see mothers of other two year olds carry full conversations with their children, where they say “I love you so much mommy!!” I remind myself it’s okay to hurt. I’m allowed to feel that way, just as I was allowed to mourn my pregnancy, and feel pain over the things that I lost in his infancy. I will mourn a great many things as he grows, and I will not allow him to feel that any of it is his fault, nor will I EVER let him feel like he is anything less in this world even if others want him to feel that way.

I know that he will have challenges. I know that his growing up will not be easy, but I’ve always grown to know that being his mother, or being a mother at all, is something that takes more than I ever imagined, it takes every part of your being and then some. I will spend the rest of whatever life I am granted making my son know that his mommy loves him and has every faith in everything he could ever be and will be in this world and will stand behind him 100%.

I’m not entirely sure when I started writing this that it had a direction, but perhaps I just needed to talk a little bit, and get out some things that have been inside me lately, and this being my platform, and my soap box, I pour my heart out here.

The truth is, I love my family. I love my son more than myself, and I love my husband more with each day that passes, and as it sits I see only better things on the horizon for all of us. Like I’m being embraced by a warm hug most days, even if some days are hard, nothing breaks through that hug.

Thank you to those of you who share in reading about my family and my journey through life here on my blog.

Till next time… Always be Humble and Kind.

Constantly Mourning, and now I am 29.

In front of you, you see a woman who us struggling to maintain, one who, from day to day,e is doing everything she must and can to hold it together. While you may see the smile on my face sometimes, it all too often masks the complete anguish and turmoil I am in at this point.  Yes, that is a cane, yes i need it fairly often now. I even have a handicapped placard for the car I am no longer allowed to drive.

Yesterday I turned 29 and while my Birthday was the best I have ever had, some part of me is the saddest I have ever managed to be. I feel more of a burden and hindrance than ever before to my son and husband. In the past four months or so I have lost more of my independence than I thought possible by this age. My amount of medications is staggering to a degree that is officially alarming. Now that I am epileptic that takes a large chunk of me doing certain things without help, like driving, away. I even have a wheelchair on standby should I need it as well.

I miss being 19 sometimes, and sometimes I wish that Zane had met that version of me. So full of spit, fire, grit, and determination. Everything mentally I am today but with a bit more of an ability to carry on. Then at least Alex and him would have gotten more out of the less chronically ill me than they are now.

It is incredible to me to look back on all I am and wish for so much more. I always knew I would likely regret choices, but I would say that my choices led me here and I would not take them back. Now my real regret is not living fully when I had the days in front of me to advance and swim in. I had opportunities on and off my whole life to push myself as hard as I do on ky good days now, but man, the things I could have accomplished. I feel as though I should have made better use of the time given. I suppose everyone probably feels that way a bit.

I cried yesterday, and I cried because I know that I will likely never be what I once was and yet again it is time to lay to rest another version of myself that I will miss.

I do not know how many more years my precious life holds. I do know this.

When I wake up each morning I am greeted by a man who tells me he loves me and who makes sure I take my medication, and get food after I am up and about. Then I get to wake up our kid, who, despite his many issues is always at his door to greet us with a “Mama, Dada!”. Sometimes we get hugs, sometimes we do not. I just remember to drink in the mornings and nights that I do get them.

Thais birthday was the best of my life, hands down. It was also very sad. I have a feeling moving foward in my life that might be normal for me. For those of tou close to me, I love you all very much. Here is to next year and making it to the big 3-0. ( My cake and gifts thia year were awesome.)

Goodnight Everyone,

Shari

 

 

 

 

 

 

 

There’s Beauty In The Breakdown

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I’ve gone through so much this past year, and today marked a day of reflection for me. Perception is key, hindsight is clear. My own ability to give of myself to others in hopes of making a change is lofty. I’ve pushed and pushed and bent and twisted looking for a much wanted return only to find the field I’ve been tending barren.

Today I sat thinking on this and the realization set in. My foot should have been put down long ago. I am worth more, I am meritorious by nature even if I refuse to admit this fact most of the time. I refuse to let people take me to the mat for their gain any longer simply in the hopes that they will step up. I shall instead allow them to step away.

The mirror above depicts just what I see the direction of my life in the coming months to be. Moving on, moving forward, and hopefully, leaving little I wish to look back to in the mirror. I won’t continue to dwell on my mistakes. I won’t punish myself for my misgivings, and I won’t continue my errors. Life is too short, too precious, and too important to bother with small people and small minds.