I woke up to the sound of a text from my daughter saying 'otw'. I was so excited because my grandson is coming to stay over. We are going to make the best of today even though I'm so exhausted and can barely keep my eyes open. Maybe we will go to the park, maybe we will go to Bluebird Gap Farm both of those are FREE. I'm all about free things lately due to the fact I'm not working much. Maybe we will just play board games and watch his favorite movies or find a new favorite. I'm learning that when you suffer from a chronic illness you need to find the silver lining in every cloud. Whether, you're having a day full of gray clouds or stormy clouds or even a day with sunny skies and no clouds or partly sunny skies, we need to make the best of every day and find something good about it no matter how small. It gives us hope. Whether it's a smile or a giggle at something you heard or saw on social media or read in a book. I'm coming closer to finding the bright side of being chronically ill. I had a really bad day this past Monday and horrible thoughts of how many people take their lives everyday due to chronic illness. I pushed that thought from my mind and I'm determined to spread awareness about invisible illnesses. So, the bright side, silver lining of today is that I woke up, I get to spend time with my grandson and I am loved. I am loved so deeply that it hurts sometimes. It hurts because I feel their love for me and I try so hard to not be sick. But you know what, it doesn't matter how hard I try not to be sick I'm still going to be stuck with this chronic illness and I'm still going to be loved for eternity by my amazing husband, my family and my ADORABLE grandson. Even if I've lost friends along the way I've made new ones. I know I'll still have days of tears and fall backs but I'll dry those tears and keep pushing forward. My wish today is for everyone to find a little brightness in their day, to find the sparkle and shine of a silver lining. My wish for you is to have a blessed and a thankful for waking up day. I pray you find one little moment of hope, smiles, giggles, and love. What a wonderful thought that some of our best days have yet to happen.
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This is an excellent article and a must read. This is a great article. 9 things you learn from being chronically ill. This will be one of the most emotional, from the depths of my soul, posts. There are those that will scroll right past this and then there will be those of you whose intrest this post has piqued. I don't write these posts for you to feel sorry for me, I mean at this point I could give a flyin rats ass if you feel sorry for me or not. I'm still here for a reason and maybe that reason is to spread awareness of chronic illnesses; not just Chiari but all the invisible illnesses. Half the time I don't know why I'm here or what my purpose is. So, if you've stopped by.... Today wasn't a good day. I had my followup appointment with my Neurosurgeon to discuss my Cine MRI, CT scan and the weakness in my legs. I got there a little early, it was still dark in the office and no one was there, not even the secretary. I get so nervous with an upset feeling every time I got to the doc. Just sitting there with all my thoughts racing. Thinking 'Will I get good news, will they have answers? Are they going to listen this time? Are they going to just push me aside and ignore my symptoms?'. I was so happy when the lights turned on and I got checked in. The nurse called me back. She's kind but I noticed these scars on her arms; I'll come back to this scar story later. Anyway, Dr Adkins comes in and we spoke about my last ER visit regarding my leg weakness. He does a couple of tests on my legs. Then he goes on to tell me, what he doesn't know! "I don't know why you are having these symptoms". Omg!!! "Seriously, you can't tell me" is my thought. If I could get a dollar for every time I've heard that and probably still will, I'd be a millionaire. He really did tell me that he didn't know why I'm having all this going on. So, he orders a few more tests to be done. Ok, the day doesn't seem that bad to most of you but if you've been going to doctors for over 20 years then this would be considered a bad day. My Chiari sister said, "All is not lost, at least you'll have more tests for more confirmation." Yes, she's right. So, this brings me to the reason for this post. I'm not even sure if I want to post this. I'm not sure if I should bare that part of my soul and the reason for the title of this post. As, I left his office and drove through the tunnel down 264, the thought crossed my mind. 'I hate living like this. I have a whole bottle of..' I had to push that thought from my mind. I had to push hard. One in ten suicides is linked to Chronic Illness. I could never do it. I could never leave my family like that. I couldn't break their hearts like that. I promise. But, the thoughts become so intense and sporadic and desperate and then I think 'Would it be easier to just fall asleep...forever'. God, please help those like this. Help those who feel intense, sporadic, and desperate. Please. There is a reason I'm writing my this post and why you are still here reading it. If you are still here 'PLEASE READ MY WORDS. LET THEM BURN A MEMORY IN YOUR MIND'. Maybe, you are like me and are a sufferer of a chronic illness or you're here to read and learn about invisible illnesses. Or, maybe you are here to get the courage to be your own advocate and get your voice heard. The title of this post is Life, Death or Living. My meaning is this; yes, I have this life but I'm dying, my soul is dying everyday and that's my death I'm living right now. When your soul dies it's painful. Sometimes more painful than my illness. So many with these invisible illnesses feel like giving up. Well, I refuse to give up. I have hope. I love seeing pics of my FB friends scroll on my newsfeed. It's a reminder of my old life. My life going out, going to concerts, to dinner, camping, dancing and those are good memories. It gives me hope. But, for millions of sufferers, they have a hard time fighting Life, Death or Living. Fighting all the time is exhausting. It's mind depleting. It's the death of a soul. Do you know that young driver that just pulled into a handicap spot with handicap plates that you see bounce out of that car? Some of you think 'There's no way she's handicap' because you see her walking just fine, for the moment. But, do you know that you could be looking at me? Invisible illness are just that...invisible. Do you know her legs might give out on her at any moment, or that her pain can be sporadic and hit her hard at any second? And when I say hard, I mean, the pain can bring her to her knees. But, she pushes herself to live. She might have given up walking further and longer to get inside a business or office for her handicap plates, she, however, has not let her illness take away her privilege of driving yet and that's why you see her in that parking space. Invisible illnesses are the Houdini of illnesses. When you feel invisible and in pain and not heard, you feel desperate. So, this takes me to those scars on the nurse. They looked like 'self cutting' scars. I can't help but wonder 'What is her pain? What is in her soul, what is her soul like? Does she chose Life, Death or Living? There's no way I could ever judge her. My choice for now is, I'm fighting to live this life I've been given and I will do my best to stop the death and dying of my soul. My life matters. I will spread awareness and sing out loud 'I'm not invisible'. I will pray that I touch someone's life. I pray I can be a voice of someone else suffering from a chronic illness. I will continue my blog and we will not be ignored. 96% of chronic illness is invisible, a lot of people do understand, we just don't know who. Be a voice. Talk to someone. Lend an ear and listen with your heart. One day the invisible will be visible. I will not be silent. I pray and pray that I won't end up in a wheelchair but reading this article it makes me fully aware of what can happen. Spread Awareness For Chiari. Please read this article and take note! I have all of these. That's scary. Even though they don't mention Chiari, it should be noted that these are symptoms and issues also related to Chiari. I'm glad my next NS appointment is Monday. The bed has been my platform and the bedroom walls has been surroundings today. I love that room with the room blackening curtains and the large high bed with carved bed posts that belonged to my late grandmother. I do, however, need a new mattress. But, this room is my haven. I've been fighting a terrible headache since yesterday. Had to put on my headache hat. Lol, my hubby has different thoughts about the bedroom like any typical man would. Lol. I love that man. I'm so blessed to have him in my life. It's 2pm here and now I'm sitting on my spot on the couch in my pajamas thinking about my upcoming NS appointment for Monday and the meet and greet for local Chiarians that is set up for tomorrow. I'm so excited about it and I can't wait to meet them all. It will be our first meeting. We will have 1 every month now. It's crazy at how many you can meet in your area and to not have known or have even heard about this disease before January. So many people are misdiagnosed and pushed aside and don't know they have it. It's more common than what's being researched because of the misdiagnoses. This is why we need to spread awareness and more research needs to be done. We aren't truly seen, our disability and illness is invisible and we need to be seen. I have my followup appointment with my Neurosurgeon on Monday. We will discuss my results of my Cine MRI and CT Scan of my head and neck. I know the results already because I'm impatient and went and picked up a copy of the MRI report. It shows diminished flow of my cerebral spinal fluid (CSF). I'm not sure what his thoughts are going to be to treat it. From my research and from those in my Chiari support group the treatment is brain surgery, Chiari Decompression. I will also discuss with him my progression of symptoms. I'm have more trouble staying balanced, more dizziness and double vision. My legs are weak and I feel as if I'll fall. Monday seems to be taking so long to get here. I miss going to work and making money. I haven't been to work since last Thursday when I was wheeled out in a wheelchair due to the weakness in my legs. It's 11am and I haven't gotten out of bed yet. Nothing to eat or drink yet. Maybe I'll try to go to the store but that would require the use of so many spoons. If you don't know what the Spoon Theory is then please take some time to google and read about it. I'll post a pic that explains a little bit of it. Remember, not all disabilities are visible. It's 3am.... I'm wide awake. So I've been working on my websites as I lay in bed. I have this one, a cooking blog and a cocktail recipes blog. My hubby keeps waking up and asking what I'm doing. lol. Ummm, not sleeping. Haha. I have just a slight headache but my dizziness is pretty bad. I'm getting late nite munchies. But I think I'll just turn of this phone and try to fall asleep. |