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.

 

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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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Two as one, and my life continues on.

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My soul sparkles and my heart shines. I am Mrs. Womack forever more. On Valentine’s day 2016 I gave myself completely in vow to my best friend and chose to spend my life with him.

 

Zane and I have had so much fun with each other. That has also been foreshadowed by a large amount of responsibility and difficult times together. We have done a lot to make our life together and our place in this world. We have worked, as a team, to be where we are. Every single day we make sure to show each other in every way we can how much we love each other. Our wedding day was no different, and every single person who was at our wedding was utterly touched by the ceremony and the amount of love we have for each other. Even the pastor who performed the ceremony was moved by the love flowing out of the two of us.

 

Did we make Eve Online video game jokes in our vows? Your damn right. Did we dance poorly with each other after the ceremony even though no one else danced? Absolutely. It was a blast. Everything was beautiful. It was perfect. I walked down the aisle to our song “Bright” by Echosmith. Our nieces and Nephew could not have been cuter. Alexandr and our Nephew made adorable ring bearers, and my brother in law and sister were wonderful. My friend Matthew walked me down the aisle to my waiting future husband who couldn’t have looked more shocked and in love. Then we were married! After our dancing foolishness and some pictures at the park we had dinner at a place called The American Bowman Restaurant. It sits atop an amazing microbrewery called O’Malley’s in Kansas that makes some amazing beer. After some amazing conversation with family and some close friends one of whom, Richelle, I had not seen in far to long and was so happy to get a chance to see even if we didn’t get to chat much given the excitement, we we relieved of parenting duty for a few days for our “honeymoon”.

 

We spent the next few days having fun visiting with Matt and doing things like playing arcade games at Dave and Buster’s, and in general just being big goofs. It was so much fun. Soon I’ll make a post about how I did the budgeting for the wedding. We were able to clock in at a VERY small budget for the wedding How small? Check out my next installment to find out, but I bet you’d be surprised to find it’s well under 1,000 dollars.

 

Moving forward. Life these days is great. Zane is going to be trying out a driving job here in town, this would allow for him to be home at night, and have two days off a week. This is absolutely amazing because a lot has happened in the last few weeks. I found out that I also have Kidney disease on top of everything else (IgA Nephropathy/Berger’s Disease) and our son was just placed as special needs as he’s showing a 25-50% delay and might have sensory processing disorder. Not to mention that I badly wanted him home. I love him so much and having him home only four days out of the month was so tough. He’s so much of my world and I’m such a strong person but he’s such a big part of my life, having him hundreds of miles away….well it sucks. I hate it. So I hope this switch sticks and works out because I want him here. I prefer him here and I have no doubt he’d rather be here too.

 

When it gets hard, you know it can get hard sometimes…

“It is the only thing that makes us feel alive

We keep this love in a photograph, we make these memories for ourselves

Where our eyes are never closing, hearts are never broken,

Time’s forever frozen, still.”

I went to the doctor today. I’m down to 165 pounds which is great. The rest of the news is not so great. I’m getting sicker, and might have multiple autoimmune disorders now. My thyroid is abnormal and big. I can’t have children but I can’t get a tuba-ligation because being put under will likely kill me. Every time I go to the doctor now it’s a laundry list of all the reasons I’m not supposed to be here, coupled with all the things that are trying to take me out of this world. I persevere but man my resolve. It’s seen better days. I don’t even know how to handle all of this. We’re talking about the possibility of Hashimoto’s disease coupled with Lupus and god knows what else at this point. I really just wish my body would get it together. I can’t understand why it has to be like this for me. I really feel like I’m a great person and what I put in the world is worthwhile. I want to keep being here but my body seems to have other plans no matter what I do. Then every time I have to go back to the doctor I have to listen to all the ways in which I never should have lived through my arm surgery, or my c section, or pregnancy for that matter, and the ways in which I should be dead right now. I’m tired of student doctors being present at my appointments. I had THREE of them in my c section. Every follow up I’ve been in, shit I can’t get a tooth pulled without it being a surgical theater/symposium. Zane says I deserve an “Achievement Get” because apparently fuck odds I live because sure why not? There’s no rhyme or reason to me being here but dammit I’m still here!

Whelp, I suppose this means I need to get on my primary doctors ass, go see a rhuematologist, and figure out everything that’s wrong. *face desk* I can do this, really I can. *takes a deep breath and tries to carry on*

The wolf inside of me

I know that some of you know that since being pregnant with Alexandr I’ve been ill. No one was sure why or what exactly lead to his early birth really. In the search for answers and with my worsening symptoms on a day to day basis I’ve been to multiple doctors and specialists. The truth is I’ve been ill my whole life. Those of you who know me well know about the struggles I’ve had with my kidneys, my brain, my heart, my lungs, and everything in between. It’s finally got a name, and it’s Lupus.

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I have two forms of lupus, and while I am awaiting the results of two more tests to fully confirm the diagnosis, the expected results are already there. Most of the blood tests were taken today at the doctor, and I’ll be getting kidney biopsies done soon. This brings in lupus nephritis which is where the disease damages my kidneys. The wolf inside me is lupus and it’s been tearing me apart for a great many years without my own, or the doctors realization.

This means a lot of changes for me in life, and that I’m going to, unfortunately, continue to struggle. There will be a lot of medication, doctors, tests, more tests, and more managing my life and care. For those of you who do not know what lupus is I encourage you to read about it. It’s an immune disorder where my immune system attacks the healthy tissue in my body. My organs are one of it’s number one targets. When a normal person makes antibodies to fight off a cold or whatever, they do their job, attack the illness and remove it. In my case my body thinks my organs and organ systems, and tissue, are a sickness, and it’s constantly trying to irradicate them. My body is a battleground.

While this is a terrifying realization for me it didn’t become real to me until I saw the look on my doctors face at my appointment today. Watching the concern, and fear, for my health and longevitity scared the absolute hell out of me. I’ve known for some time this is likely the possibility and would most likely be my diagnosis. I did everything I thought I could, but nothing prepares you for when the other shoe drops. It’s like getting punched in the gut by the strongest person you know, and then being expected to walk away clean. On top of all the other problems I’ve encountered, they believe I now also have glaucoma as a result, and I’ve already lost 20% of my outter rim vision. It’s also a very concrete reality that having another child is so inherently dangerous for me that I likely will never have another. I’m so glad Alexandr is here and healthy.

If you see some changes in me, it’s because I’ve decided now more than ever that I must live my life to the fullest extent possible. I must make my time with my son the most worth while I can, and I don’t want to live with any more regrets or sorrows in my life. I have no idea how things will be for me from day to day. I really don’t, but I’m going to do everything I can to greet each day head on in a way that I can be proud of. I’m going to kick life’s ass every single day that I can get the strength in me to do so. Lupus is not a death sentence, but it is a life sentence. I will spend every single day battling this for as long as I live, but that’s okay. I know that I can do this and the strength I’ve had living with this for as long as I have, with no face to it, and not knowing what to call it. It’s shown it’s self now, and I will own it. I can and will be a fighter of this. The wolf and I will tangle, and I may not always win, but I will fight with every breath I’ve got.

To my friends, please be kind, and patient with me. Know that this is going to be a difficult process for me, and I do absolutely need my friends, so much. If I don’t always feel up to talking please don’t be angry, or feel that it means I do not care. This is a lot for me to take in and there’s a certain amount of mourning that I’m going to have to go through.

I leave off with this, Rob Thomas wrote this about his wife, who has Lupus and struggles with it every day.