I recently found out I have Chiari malformation where my brain does not have enough room. It slips down into the spinal cord causing neurological issues. I have wondered if the abuse I was subjected to by my ex husband created this monster or just made it worse. Sometimes I want him to pay for what he’s done to me and my kids but reality is, that would do nothing for me. The only thing he can do at this time is be a better person for my son. I sometimes want to be mad. I want to blame him. I want to be angry. But ultimately, I’m just not. What a miserable person he must have been to do all the things he has done to so many people. I wish him nothing but healing so he doesn’t continue to ruin people’s lives.
With the diagnosis of Chiari comes more questions and not many answers. I’ve known for years something was wrong with me. I just didn’t know what. But I knew enough to know that feeling like you’re 90 when you’re in your thirties is NOT normal. No matter how many people tell you just wait till you’re older. Especially when you look fine on the outside. I’m not fine and I’ve known it, I just didn’t know why. I’ve had plenty of people tell me I’m just lazy, like I enjoy feeling so old. 🙄😂
It feels good to finally know why I can’t make it through a day without a nap. Or why some days I have absolutely no energy and have to force myself to get anything done. I hate it! I’m young! I like to make, create, do, and here I am, I’m stuck with a body that is unable to function some days. On those days I lay in bed with a heating pad on my head and face. The pressure in my head is relentless and no amount of medicine touches it. I’ve even recently tried topamax, a seizure medicine also used for migraines. It was the worst experience of my life. It made me a zombie and I couldn’t think or make any kind of decisions. It was scary and I told my doctor after three weeks I’m never taking it again. I tried the medicine even though I didn’t want to. I felt I can’t complain if I don’t try what they suggest.
Unfortunately there is no cure for Chiari. It is simply managing symptoms and if it worsens there is always surgery to give my brain more room by cutting a hole in my skull 🙄. At least I know the why and now it’s finding what medications will work for my issues. I’ve finally felt like myself for the past few days which I am so grateful for. It has been a very long couple of months. I joined a support group on Facebook for Chiari malformation and it has been a godsend. I read my story over and over and I cry because someone else actually understands! A complete stranger no less, but I am not alone. ❤️❤️
On the outside I look like I’m a normal 40 year old woman. On the inside, I’m barely holding it together. I’m sick of people not taking me seriously because I look fine. I am anything but! But no one cares. No one cares that I don’t have full feeling in my right arm and that every single task I do takes extra willpower and a fake smile just to perform it and make it look like it’s not killing me. And pretend like my right cheek isn’t numb. I ignore that the right side of my head has so much pressure that I can’t see right and my right neck is in so much pain and that pain shoots down my shoulder and into my arm. When in reality picking up even a drinking cup with my right arm is difficult and it hurts today. And it’s scary when you’re a nurse and you’re doing important things with your arms all day. But I do it, I fake it. I act like I’m fine and use my left arm more than normal to ty to compensate. And stretch my right arm in funny ways to try and work it out. But there’s only so much I can do. I cried plenty of times today. I’m tired and scared quite honestly. I’m tired of working so hard at a job that no one appreciates what I do. Let alone the fact that no one appreciates that I’m doing it while I feel like half of my body is literally dying. I am killing myself for a job that would replace me tomorrow if something happened to me. Always requesting more and more from me, my hard work is never enough.
So all of that to say that I’m not always kind. As much as I wish I were, I’m not. But I try to be as often as possible. I just wish I got the same in return. Because quite honestly most days I’m just barely holding it together…
I started noticing odd things about 8 years ago. I noticed I had trouble holding spoons when I was making food and stirring it. My hand just didn’t want to hold onto it properly. I found it harder and harder to lift a pan with just one hand and flip it over into a bowl. Simple things you do daily and don’t think twice about. Over the years it has worsened and I now can’t even write with a pen or pencil for very long.
These past few months my hands and feet will go numb for no reason. I’ll be sitting at work and my leg goes numb and I find myself shaking it to try and make it feel normal. My last two fingers go numb and tingling often and it radiates up my arm. I stretch and shake them but it doesn’t help. I’m so busy at work I just keep going. I really don’t have time to even think about it. Then there’s the pressure behind my right eye and ear. And the pressure at the base of my skull that feels like it’s going to explode at any moment. But I keep going because well, what else can I do? I don’t really have a choice. I go on about my day as if everything is fine when it really isn’t. It’s harder and harder to function and my brain is in a fog more days than not. It’s scary actually.
I now have headaches almost daily and recently have the added pleasure of dizziness that comes and goes as it pleases. Oftentimes migraines where I spend an entire day in bed unable to move. When I work it takes everything out of me and I spend the entire next day in bed with a heating pad rotating from my head to my back recuperating like a 100 year old. I don’t understand why my body does these things it just does. Trust me I don’t want to feel this way. I have so many things to do. So many things I want to do. My body just won’t cooperate. And the hardest part of all of it is the fact that no one understands how I feel at all. So I act like I’m fine. But I’m not. I have so many more symptoms but it’s really here nor there. The point is it sucks!
I’ve gone to the doctor more times this year than I ever have because I’m so sick of feeling this way just praying for some answers and they are finally starting to come. I most likely have Chiari malformation where my brain is slipping into my spinal cord. I’m still waiting for more answers but it’s a relief to know what’s causing my issues. While there is no relief in sight it is good to know the cause. It has taken a long time for answers as no one seems to have take the time to listen to what I have been telling them over the years what is going on with me and it has taken this entire year to have an mri ordered 🙄. Gotta love our healthcare system! At least I have finally found the cause and can appreciate what I have while I have it.
With it being Christmas I just wish people would stop focusing on stupid gifts and what they don’t have and be grateful for what they are blessed with and help others along the way instead of always worrying about what can they want next. It sickens me what our kids are turning into. I hope my children see others and their needs and help them instead of focusing on their personal wants. This world needs more of that. I just hope some day they see and understand that for themselves ❤️❤️
I have been dealing with my abusive ex as he is the father of my youngest. He is still trying to control what I do and telling me I’m an unfit mother. Does it hurt? It does, but only for a moment! I know I’m a good mother. I know I’m a great person. Am I perfect? Not even close lol. But I know my worth and he cannot take that from me no matter what he says! He can make all the accusations he wants to, but the fact is, they aren’t real. And anyone who chooses to believe him is definitely not any part of my life and he has them fooled. Honestly, I feel sorry for those people. He can say he has changed all he wants, but when people in his life close to him call me crying about what he is doing, I know he hasn’t. But he is good to my son at this time and that is all I care about.
I have peace in the midst of his accusations, and I know everything will work out as it always does. He claims he is taking me to court for custody. It’s sad that he even thinks he needs to with the fact that I let him see his son whenever his son wants to should be a testament to my character. Just yesterday my son wanted to stay at his house. I have these days off and really wanted to spend them with my son, but he wanted to stay there. So I told him he could. Ultimately, all I care about is my son’s happiness. Even though his father will claim otherwise. I am the bigger person and always will be. He can’t change my loving heart! ❤️ I am beyond proud of who I am and what I stand for. I will never let him destroy me or my children again. I am at peace. ❤️❤️❤️
I cried at work. It is not the first time. However, it is the first time I have cried for this particular reason. I have cried many times as a matter of fact. I have been unable to save a life. I have delivered news of having a terminal illness and pretty much handing over a death sentence to young and old alike. I’ve seen many people die, young, old, sick, and healthy even. But last night I cried not because a patient died, but because I am unable to care for my patients as they deserve.
What has our healthcare system come to? I am a nurse. My job is to care for patients. Unfortunately, I am unable to do so in a manner in which I would like to see my own family member cared for and I just cannot take it much more. We as nurses and aids are strapped for time. Running for 13 hours straight, lucky if we get to eat. God forbid you actually have a drink of water, coffee, anything, during those 13 hours. Forget peeing. You have patients sitting in urine for hours because you don’t have the time or staff resources to get to them until then. Is this what you want for your family member? Me either. So I cried.
I am devastated I cannot give a bath to every single patient every single day. That should be standard care I should think. But when you don’t have time, you just don’t have time. I’m sorry but that’s just unforgivable and I’m so embarrassed to work this way. You haven’t had fresh water today, I’m sorry I will get to it when I can. It might be 2 minutes. It might be 3 hours. You just never know. It all depends on how we are staffed that day and how many patients I have assigned to me. Oh, the list could go on and on but I’ll spare you. Just know being a floor nurse breaks my heart daily and I’m sorry to each and every patient and their friends and family.
The most unfortunate part is there is absolutely nothing I can do. My hands are tied. You can’t change the healthcare system. You just have to play the game. And that’s what your health amounts to. A game of how to cut corners and make money. For this I am sorry and I don’t want to play the game anymore.
I’ve been abused and it haunts me to this day. I also have three children who suffer as well. And it’s all my fault. I allowed him into our lives. I believed his false pretenses and fell for his lies. Up until the day I met him I believed people were good. I had never met someone evil before. Everyone has a good heart like me right? I was soon to find out that is not reality. And my children learned that hard awful lesson at a very young age. I hate that they did, however, hopefully they won’t be as naive as I.
We are moving back into a home that was supposed to my family’s home during the time of our abuse. I wondered how I would feel about it at first. My kids wanted to move back and I want them to be happy. When I first walked into the house I saw the coffee table where there was once a butcher knife sticking out of it when I returned home from work one morning. It took me a moment to collect myself but I was ok. I’m stronger than him. He won’t destroy my life anymore.
My kids are still learning how to deal with the repercussions of his actions. They remember me being hit. They remember seeing him with drugs in the kitchen and people coming to the house all while I was at work. They remember every single valuable thing they had was stolen from them as he sold it for his drugs. I would buy them a new one, for it to only be stolen again.
I couldn’t get him out of the house. We were married and he had every right to be there and drain the bank account and sell everything. And the kicker was, if I left, that was giving up possession of the home and allowing him to have it. As awful as it was I had to stay there until we were all evicted and then my kids and I could return and not have him on the lease. And that is part of why I have no faith in the justice system. There’s so much more but I’ll spare you the details.
I walked into the bedroom where he once drew on the wall a picture of his brain and an arrow where his “brain tumor” was. It’s actually laughable now and that’s another story I’ll share at another time. Needless to say, there was no brain tumor 🙄. That’s the same bedroom where I would sleep with my keys, phone, and debit card in my pocket to try and keep them safe. But only sleeping four hours a night bc you had to work two full time jobs to attempt to pay the bills because he stole all the money. Well, you can see how easy that would be for him to take things out of my pocket as I was dead asleep in my jeans so I’d have pockets.
It will all haunt me forever. It’s so much easier now since I have learned to forgive someone who was never sorry. That doesn’t mean I never get angry because trust me I do. A LOT. However, life goes on, and in order for me to be happy I have to let all those awful, terrible, sickening things go. My children have not quite learned how to do this yet. And I understand that. I didn’t learn this lesson until recently. I just hope they learn the value of it much sooner than I. ❤️
I held a beautiful baby tonight for the first time since losing mine. Heartbreaking and beautiful at the same time. I absolutely love babies and wow I have missed it. Those puckered lips when they stretch those arms. That curve in their back. Oh my heart ❤️ The sleepless nights when they won’t stop crying and you don’t know how much more you can take. Then they settle into your arms, quiet and peaceful. Your heart explodes with love. Such an indescribable love you’ve never known existed. Pure and simple love.
It’s not all bad. I’ve accepted what is reality and it’s ok. It’s just bittersweet. I’ve seen many babies since losing mine and it comes in waves of upsetting me. It didn’t bother me much at first. Then it really hurt to see them and miss what could have been. I wonder what he would look like. Blonde hair, blue eyes, and mischievous I’m sure he would have been 😜.
Those tiny feet left an imprint on me that is for certain. Never would I have ever thought I’d go through something like that. But I did and I made it through. It’s pretty amazing how we learn to cope and deal with things we never thought we would or could. Yes it’s heartbreaking and sad at times. I cry sometimes. And it’s ok. I’m ok. And I know he is too ❤️