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.

 

Give em land with a good view, to start a family

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Things in our country are tense right now. A lot has been going on the last few months and as someone who follows politics pretty closely, and who has been a pretty avid follower of it since I was in high school it’s all hit pretty close to home. I have seen a great deal of hate, sorrow, and ugliness in the days following the presidential election, and I feel the need to turn away from these things.

With some of the important holidays just around the corner I’ve felt it’s important to reflect on the things I’m thankful to have. Before I know it Alexandr will be three years old. His Birthday is in February, and I cannot believe he is growing so fast. His mind amazes me on a daily basis. My husband is my love light still and that flame burns with a ferocity that I’ve never known in life. I could look into his eyes for hours. Pretty sure he could do the same with me, though I cannot pass words from his lips in his absence, I think I could make a close appraisal of his level of affinity.

This year will find this house void of company come Thanksgiving. The sounds of my husbands voice and laughter will not be here. As a result, our footsteps shall not grace it’s floor either. Alexandr and I will do what most people do, and for once fit into a strange societal standard I’m not accustomed to meeting. We shall travel for the holiday. We will make new memories with my wonderful sister, and her beautiful children. We will forge fresh beginnings, and I’ll be invited into the warm and open arms of family. We’ll cook turkey, drink wine, and share our lives in a way we are not always able. I am grateful for the opportunity.

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Not all people are as blessed as I, nor do they lead as warm and loving a life as I do.

I face challenges, with my health, and my sons.

I do not lay my head down at night worrying about the roof over my head, or if there will be food to eat in my home anymore, I do not worry if we will be able to provide an ample Christmas to our child. The contrary, I wonder where we will put the new gifts he will be provided!

I realize now more than ever, that the love, and family that I have, albeit small compared to some, is so warm and strong, that I could wrap up in it like a thick blanket, and carry it with me. It would shield me from so much harm if I would let it. That is a true blessing, and for it I am incredibly thankful.

 

The thought of arriving, kind of feels like, dying I don’t want, to go home and be, alone…

  So I have been on hiatus for some time now for those who may have noticed. Enter my triumphant return. Ever changed by the experience.

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Both my chariot and husband awaited me. We rolled away with eighteen wheels and where the road normally took my love light from me for a time, and with it my heart along side him, this time I went along for the ride. For two whole weeks I left my normalcy behind. It was like being swept into a whirlwind. Before I knew it we were leaving everything I knew behind and even states that I knew behind. Then it was just me, him, the darkness and the headlights on the ebony asphalt in front of us. My feet up on the dashboard of his truck, we had all the time in the world, or what seemed that way in our minds.

When you only have four days a month in your marriage to drink each other in, those moments become precious. You treat each day you are with each other like minute to minute, you have to make it count. Having so much time was almost dizzying, for us both. At first I don’t think either of us knew what to do with each other. We have been together now for almost a year and a half, and our one year wedding anniversary is incredibly soon as Valentine’s day sneaks up on us. We know each other so well that we can be in different parts of the country, yet we can feel the dissonance in each other. Like some strange disturbance in the force we can simply detect when the other person is suffering silently.

This leads to so many phone calls randomly, be it in the middle of the afternoon, or at three in the morning.

“I needed to hear you” or “I felt like I should call” I’ve never felt so synced with someone in my life. Our souls dance across the distance, and I feel it, no matter how far apart we are.

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As the miles passed we talked. We connected with each other on a level we hadn’t always had time to. With the creeping stretch and wind of the roads and hills, the crawl of the pavement and the tick of the clock, every mile we drove we both learned a little more. Zane and I have been friends for so many years. Six to be more precise, but there’s so much that sometimes you just don’t say, and even as partners there is always room to learn more.

I shared stories from my childhood that he had never heard. He shared some with me. The miles passed. We made jokes, laughed, held hands between gear shifts up hills and around curves. I read books out loud. We sang together, loud and uninhibited in the wee hours of the morning. We talked of our aspirations for our life together, and for our son. I took in the landscape of eight beautiful states. Four of which I had never set foot in before in my life.

On top of this I gained something else. Perspective.

I gained a newfound respect for the man that I love.

I have always had the deepest and utmost admiration for Zane and what he does. The man sacrifices himself and his time to provide a life for his family. It kills him to be away. The look of pure anguish on his face when he has to leave is gut-wrenchingly brutal. I thought I knew how hard his job was. Until I watched him do it. He works so much harder than I could have ever imagined in my head or realized.

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The time I spent in that place he calls home when he cannot be with us, his family, at his real home, showed me what an amazing individual I am married to. I felt like I gave him enough credit an admiration before. He will get even more now, of that there is no doubt.

The hard part comes now. Now I am home, and I have had to let go of his hand once again. This time for eight weeks, so that I may have my light back in my life for Christmas. After getting such valuable time together I got comfortable. I keep reaching for his hand, and turning to see his face. Only to be reminded that he is not here, and sadly, I cannot see him. Thank goodness for technology.

What I wouldn’t give for his breath on my cheek, or his hand brushing back my hair.

His gruff voice telling me how much he loves me in my ear as he holds me tight.

Lying next to him as we fall into a deep sleep.

Dream of me tonight my love.

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Did you and jupiter conspire to get me?

CROSSROADS

I was talking with some friends today about a subject and it brought up the song that Zane I both hold dear. One day I would like to make our story into a book, but for now I’m going to commit this to my blog.

I’ve been through alot, and last year a lot of choices had to be made in my world. I made a very hard choice to end a relationship, and go it alone. In that venture I was presented with a new prospect.

You see Zane has been one of my best friends for a very long time. For many years. He’s been someone that despite any differences we have had in our past, we have always found each other in the dark, and held each other up to the light. Last year during my dark time and having to make the choices that I did. I found him by my side more than once. I was faced with weather or not to allow myself to entertain him as someone I would consider dating. This was not a choice I took lightly. He’ll tell you himself I did not make it easy on him lol. I spent a lot of time dwelling over the decision and trying to decide in my heart how I really felt. I did not want haste to cloud my judgement.

I remember waking up from a very vivid dream, in that dream I found myself standing at a four way stop, and as I stood there I was unable to will myself to choose which direction to go, and which path on that road to take. No matter how much I urged my feet to move forward, I simply could not.

For those of you who know me, or follow my blog, you know that my husband is an over the road truck driver, so during all of this, I was not able to see him, which may have been the best thing in making my decision or trying to sort myself out. It gave me a fair bit of distance to clear my head.

One day I got particularly angry at myself for being unable to make up my mind and have any clarity or hold on anything. I’m usually so level headed, why was everything so incredibly murky?! I didn’t want to ruin our friendship, and I was so scared of being hurt, I was so fragile…

So I ran. I ran as hard as I could, as fast as I could. I remember hearing my feet pound the pavement. Thump, thump, I could hear my tennis shoes hit the asphalt with the full weight of my body with each individual step. I could hear the sharp breath in my lungs and feel the sting as they drew in. I didn’t know where I was going or when I would stop. I just ran until I could run anymore. I even remember yelling at some point.

When I finally did stop I looked around and all I could see surrounding me were trailers. The kind he would haul around attached to his truck. Somehow without realizing it, I had made it to pretty much the only place in this one horse town that has a giant lot full of them. I sat down for a minute and soaked in the irony of it all before sending him a message to that effect, then of course it began to rain. I actually welcomed it in the blazing heat. I began walking aimlessly with no destination in mind still. I suddenly stopped walking and found myself compelled to look up. There I was standing at that four way stop. The one from my dream. I had never been there before but there it was. Somehow I found my footing and was able to continue forward and pick a direction this time.

Then, there in front of me passing down the road was a white dodge truck, with an amber light bar, and all I could think in my head was “Sarah”.

Those of you who don’t know, my husband has gone by Dodge, or my more familiar version “Dodgie” for years, due to his love for Dodge’s, and he had a particular truck named Sarah. Her identical twin must have passed directly next to me.

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I sent him another message and said I swear I felt like someone was tapping me on the shoulder, or that he was following me.

His response was it must be the universe, and a simple LOL. I kept walking.

A minute later, the song “Bright” by Echosmith came over my headphones, as the entire time I had been walking I was listening to music. I had never heard this song before as it was fairly new at the time. I got chills and almost dropped my phone. I stopped and sat down below a stop sign. He didn’t know it at the time, but right then and there I felt I was being told what to do.

I believe in signs all around us. Call it fate, call it divine hand or intervention, or call it coincidence if you like. I believe something was telling me that day that Zane was my path. That I was supposed to give him that chance, reach out, and take his hand. I was terrified and in awe of the signs that day, and I am still shocked by the things that occurred. As a result, that song has always been our banner to each other and since we are apart often, we say that at least we can see the same stars at night.

I know it might sound cheesy, and I know a lot of people say it, but of all the love stories, I think mine is our favorite. It took a lot for me to make the choice I did, and it was not an easy one. It changed a great deal about my life, but I am glad I did it, because I could not be happier with Zane as my partner, lover, and husband.

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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.

Being a Spoonie, and what’s wrong now?!?

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As many of you know, it’s believed that I have Lupus, though my diagnosis isn’t officially on paper yet. I go to see the doctor that will confirm this in July. This means that I am chronically sick. I am never fully healthy and I don’t ever “get better” which sucks. One of the most common terms tied to chronic illness is being a “Spoonie” this is often for those of us who have a hard time functioning on a daily basis. (Hang with me for those who know me I’m sorry if I mess this up you’ll read why I might be writing funny).

So the idea is that everyone has energy, and normal people have an unlimited amount. Those of us who are sick, are limited. This is measured in “spoons” kind of like teaspoons. Those of us who are sick, when we run out, we’re out. We only get so many a day and each activity uses up some of our spoons. You can read more about it here.

The Spoon Theory written by Christine Miserandino

So recently things took a large turn for me, on the 10th of March I ended up in the ER with some really severe pain. They treated me with steroids and the norm, did blood tests and everything came up the way it normally does. Not normal for a normal person, but semi normal for me. I went home, took the meds, rested, and immediately started to improve. Then it came time to come off the medication and things went to hell in a hand basket.

About a week later I came off the prednisone steroid med, and as soon as that happened I started to swell up, badly, and then my joints and muscles became so stiff that I could hardly function, I called my doctors office who could not fit me in, they told me to go back to the ER. When I returned they immediately gave me more steroids as well as some other medications to fix all the issues. They began to determine that I was in a flare. The next morning I saw my doctor who decided to continue to let me flare on and off until July when I see the rhuematologist. I’m thinking of switching doctors because he believes that treating me is a bad idea, instead he wants to wait until the problems worsen, and then try to fix them.

After all this on the 24th, I had a seizure, the first time I’ve had one where my body twitched. I ended up at the hospital again and they determined it was a simple partial seizure, they gave me ativan along with some other medication including more steroids because I was still swelling, and antibiotics because my bloodstream was showing antibodies as well as my white cell count being high. The next morning I saw a doctor in my doctors office, he is getting me a wheel chair, since I have now lost my ability to walk, the vertigo is too bad on me, at the current moment. He’s sending me to a neurologist to check me out with an EEG as soon as possible.

Since then I have had a petit mal seizure and a grand mal seizure, my very first one of those. I still cannot walk and after the grand mal seizure I was paralyzed for a good 10 minutes. Every seizure has been preceeded by some aura, from me smelling onions, to seeing our cat as shiny, to talking about random ducks and ladies that aren’t there.Everything about this has been scary as hell, but this is where I am today. I will continue to fight. I have no idea what my future brings or how many of you wanted to know any of this, I just felt like letting it out and a facebook post wouldn’t do it. I’ve let some of you who are closest to me know via private message what has been going on, and if you want to know more please feel free to ask me.

For those that are wondering what we think is happening here is your answer. Lupus as some of you may know, attacks the healthy cells and tissues in my body much like your immune system would attack a cold. It seems as though it’s beginning to attack my brain on top of the other organs it’s been attacking. This would explain why i am beginning to have seizures. We don’t really know anything for sure right now and right now I’m just in limbo. I’ve been so groggy

Zane has been amazing, he’s been taking care of everything, the house, bills, cooking, cleaning, Alex. Everything. I could not ask for a better partner in this life, he’s incredibly supportive and even though I know he’s just as scared as me, he’s there, 100%, exhausted, and fighting right by my side.

These boys are my strength. Happy Easter to you all.

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We look good side by side, walking back to the hotel.

So I’m back, again. Sometime I’ll get back to this full time, hopefully that time is now. Daniel and I are very happy with each other, I think now more than ever, at least, that’s how I feel. We’ve had some severe ups and downs in the past year but that is one thing that has never changed. Even now he’s laying on the couch with our dog Jake and I swear he could not be more adorable if he tried. We have a new dog now, our birds and fish have since passed away, no idea why but that happens I guess. Jake the Jack Russell Terrier is over a year old now, and Riley our new dog is a few months old. 4 or 5 I think.


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That’s our doggies. Jake is a daddies dog, Riley is a momma’s dog hardcore. They’re both great.

Things are going well right now, we’ve started a company and do business for ourselves, which is interesting but it works. Being our own boss is neat. Well it’s almost 7 pm I think it’s probably time for my slacker hubby to wake up, look forward to the next episode soon.

Shari