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.

 

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

 

 

 

 

 

 

 

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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Flash the stars across the sky, for the new year comes.

The fireworks explode as the Waterford crystal ball is raised at the beginning of Times Square New Year's celebration, Monday, Dec. 31, 2012 in New York. (AP Photo/Mary Altaffer)

“Tomorrow brings the first blank page of a 365 page book, write a good one”

2015 is about to hit it’s expiration date.

Tonight we welcome 2016. Personally I will welcome it with an open mind and open heart.

2015 brought a world of changes, new hope, upheaval, turmoil and pain, but also glorious happiness I never knew I could feel.  2015 marked Alexandr’s first new year on this earth. The first half of the year brought on a lot of thinking and inner conflict in me. I made a lot of changes as a result and while they were difficult ones to make, man has my life taken such a turn.

To borrow from the best person in my life, and the one who keeps me going. There are always speed bumps on the road, and you’ll get through them. You just have to take them as they come. I’ve had plenty of those. This year brought the onset of illnesses and chronic pain. Frustration with those around me and pain from some I cared a lot about. It also brought new love, joy, and care I’ve never known. It brought realization about myself. I learned how much of me I wasn’t listening to, how little I was valuing myself, and how much that was hurting me.

In the coming year I will make no “resolutions” instead I will make a pact with myself. To love myself and those around me with no reservations, no restrictions, and as much as possible. To drink in every kiss, hug, and smile that I get from my son, and my boyfriend, and to relish in every beautiful moment I get to have with them, even the frustrating times. I’m going to make a pact with myself to slow down more, sing louder, dance more often, be sillier. I’m going to laugh, god dammit I’ll laugh as much as I want to. I only get one life, I don’t know how long I’ll have mine. I’ve made a lot of mistakes, I overstayed in situations for way longer than I should have, I lost myself. Today I can honestly say I know who I am, I am Shari and I am the Shari that I was as a little girl, a teenager even as much as I hid it from some, and the one that got muddled along the way from that point forward. I’m a much better, happier, and more centered version of that girl though. I will try never to lose myself again.

To a few of those important to me in particular:

Alexandr, though you are not yet old enough to read any of this. I want you to know that I love you. You are very much testing my patience the last few days, but you are about to be two my son, and as I watch you play with your Tonka Semi Truck with the biggest smile on your face I can’t help but melt. I know you will not be this way forever child and will do my best to remind myself of this in the time to come.

Zane, my wonderful sweet Zane. You are my rock dear and my best friend. What can I say to you other than thank you? Thank you for making my world what it is. I know my baggage is heavy but you make it lighter than air. Thank you for all the two in the mornings. For all the times you let me call you and wake you up, not batting an eye, and being there with an open ear and heart to listen. For holding a mirror up to me and showing me just how wonderful I really am, and showing me what your love could do to me. Most of all, thank you for hanging in there through that tough time this year, and still being around on the other side when I knew what was in my own heart and mind. This year I will do my best to continue being as good a girlfriend as I possibly can, and to do even better going forward.

Crystal, my awesome sister. We haven’t always seen eye to eye, and sometimes we’ve seen back to back. We have both worked for years to improve our relationship with each other and it’s done a world of good for us both. Without your kind words, support, and help over the last few years I shudder to think where I would be. You and I don’t have much overall as far as family is concerned but three girls always tried to stick together somewhat. You and I have become very close, and I can at least say that our relationship is strong. I will do my best this year to work even harder to spend more time face to face with you, over coffee and wine, with more hugs, tears, smiles, and possible pants peeing.

So welcome 2016. I am ready for you and all you bring. I have a feeling you’ll be one of the most amazing years of my life.

Shari

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Another year, another Christmas to come.

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Every year I’ve always looked forward to this holiday. I think because it was the one time of year that most years, I can remember as being happy, for the moment, in my crappy family. Presents were given, even though in the following months my sisters and I would often see those same presents find their way into the hands of other people or pawn shop owners never to return. At that time of year we got to be happy, even for a fleeting moment. Most years we got to see our grandparents, who I love dearly. Our parents didn’t fight on most years, there was gifts, happiness, food and laughter. The things you’d expect for anyone. The picture of a happy family. I know that having things isn’t what makes Christmas special but it does help, as does having a place to live, and food on the table. In the last 8 years I’ve gone without one or some combination of all of those things at Christmas, or some other part of the year as well. I know that I never have any desire to have that be part of my life again. I also know that I love giving and I have so much in me to give that it makes me so happy to see joy in other people. Particularly those I love. Lately, I’ve been able to see joy from a new angle in my life. For once I’ve been able to see what life is like in a way I’ve always wanted. I’ve spent my entire life in a constant struggle. Like my whole world could come crashing down on me at any moment, and has at times. Goodness is it heavy to pick back up from under it and put it back where it belongs, but I’ve certainly done it my fair share of times and then some. For months now though, I haven’t had to feel that way, and even more so, I’ve been with someone who holds that world up, hand in hand with me. That’s a great feeling. There are so many basic things I’ve not had as even a remote worry or question that I wondered if it would ever be that way for me. Not just monetarily, but emotionally as well. I have a house and a home. I have a place to live and the love of my family.

I was at a stop light in Traffic today and I looked over at a home with twinkling lights hung in the window and watched as they danced. In my head I flashed forward to all the Christmases I know I’ll have moving forward and how wonderful I absolutely know they will be. I can’t explain how happy I am with my life. I may not have my full health, but I have good days and bad, and I try my best to enjoy the good days as much as I possibly can, whenever I can. I enjoy so much about my life. I love my wonderful boyfriend Zane more and more every day, and very soon we will celebrate the fact that we’ve been together for six months, I love my son who brings light into my world with everything he does even when he drives me to the brink some days lol. I even enjoy being a house girlfriend and home mom. I miss school and can’t wait to go back in January, it’ll be a little slower paced so that’ll be nice, but being able to be here with Alex to help him learn and grow, doing laundry, dishes, making sure everything here is taken care of and in order? I love it, it makes me very happy. Not everyone has that ability, I have it for two reasons. Zane is a great provider and affords me that ability which makes him absolutely amazing, and I am unable to work anymore. As a result of the two I get to be here and I couldn’t be more thankful for my position in life. I am so lucky to have what I have despite the challenges I face, I could have, and have had it much worse in my life and it is so full of love, happiness, and pure elation that it spills out of me sometimes. I love it.

There are days I wonder if I do enough to earn the love I get from my family, but I work as much as I can to make sure I do. I like to think they know how much I care for them through my actions, and that’s all I can hope for.

So today I leave you with probably my all time favorite Christmas song.