Frustration at the insurance company. Frustration at the doctors office. Frustration at the people answering the phone. Frustration at not being able to get the help I need. Frustration at being turned away from another doctor. Frustration at the pain I'm in daily. Frustration at the things I can't do anymore. Frustration at the increasing medical bills that we can't pay. All the frustration brings tears, so many tears that it could fill a lake or burst a dam.
I tried to make phone calls this morning and the only thing that happened was me getting upset and frustrated. I've been trying since January of 2015 to find the right doctors to help me. I've been turned away by 5 neurosurgeons who say that can't help. Now, I'm trying to get to the true specialist in DC but he is out of network and I only got approved for one visit. This was after many many calls to finally get that approved and it sucks that it's only approved for a one time visit for now. I still don't have an actual appointment because the doctors office is waiting for the authorization code by mail on a letterhead, even though I had the code and could tell them what it was. But, they want it on a letterhead. I mean how hard would it be for them to verify what I told them it was? I'm sad. I cry. I get discouraged and disappointed. I feel like I'm living in the twilight zone between a parallel universe and I can't escape. I'm not the 'textbook' Chiari patient and that's why I keep getting turned away because the neurosurgeons in Virginia don't recognize Chiari Zero and they say I don't need any help from them. This is why I need to get to a 'true' Chiari specialists. Yes, there are neurosurgeons in Virginia that say they can treat Chiari but they only go by 'the textbook' and they don't think outside the textbook box. The ones in Virginia do Chiari surgeries 2-3 a month compared to the specialists who do 3 or more a week. The true specialist knows EVERYTHING about Chiari and all the comorbidities that go along with it. I'm not a typical textbook patient. I cry every single day. I'm scared. I'm exhausted. Pain is scary and exhausting. Sometimes I feel like giving up. Who would you trust your brain with? Would it be someone who does Chiari surgeries 2-3 times a month or one who does 3 or more a week and who thinks outside the textbook box? This is not how I wanted my life to be, but it is what God has planned. Maybe me fighting so hard will help others in their Chiari and Idiopathic Intracranial Hypertension journey. Oh, and their Fibromyalgia journey as well. I live a life of daily pain with some days so excruciating that I can't take it. I have the most supportive parents and the most amazing husband. They keep me pushing on. I want to be a voice for those of us that keep getting denied, but I need to be strong enough and I need answers for myself before I can help others fight. I'm Chronically Fabulous and I'm still fighting.
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I am beautifully broken.I haven't written in a while. It takes so much energy and I'm struggling lately. Writing drains me, it drains me emotionally. I keep everything locked up inside for so long and when I finally let go, it's like a busted dam and the flood is eminent.
The other day I saw a friends post on social media. She was taking one of those random questionnaires. I saw that one of the questions was, 'When was the last time you cried?'. Her answer was '18 months'. I was so impressed and then I felt even more broken. I cry every single day and I just kept thinking, dang her life must be so happy. Sometimes I get envious seeing others post on social media, about all the adventures and things they do. I miss my adventures. I miss my days of dancing all night, riding roller coasters, kayaking, hiking, walking all day at a local fair and shopping. I have a chronic illness. Actually, I have several. I have Chiari Malformation, Intracranial Hypertension (IH) and Fibromyalgia. My latest neurosurgeon thinks I may also have Ehlers Danlos Syndrome (EDS) with Craniocervical Instability (CCI). I've had 5 surgeries in the past 7 months. I'm in pain every single day. It never goes away. Some days are tolerable and I can do a few things, but the pain is still there to remind me that I am broken. The dreams I had for my life are no longer available. I've had to make new dreams, but some days are so painful that I feel those new dreams slipping away. Lately, I've needed a wheelchair when I go out. I'm only going to doctors appointments. I'm not ready to go shopping or out to dinner in my wheelchair just yet. My illnesses are what you call, 'Invisible Illnesses'. If I put on some makeup and wear a cute outfit, then you can't tell how broken I really am. Makeup and a cute outfit does wonders. The one person that can hold all my broken pieces together is my amazing husband. Everyday he tells I'm beautiful and how much he loves me. I can't imagine how my life would be if I ended up with any other man. I wonder what he thinks about me being so sick? Some days, I wonder if he wishes he had married someone else? We can't make love like we used. I have to wait for a day of tolerable pain, which are few and far between. I know he has his needs and he loves making love to me. I just wish I could give him more. I miss the days when we would just pull over somewhere and park because we wanted each other so bad. He so patient and he loves me unconditionally. I'm impressed with how patient he is. He truly loves me. He loves all of me. He loves all of my brokenness. He's loved me from the first time he saw me. We went to the same high school and he said he had a crush on me then. He never came up and talked to me so he just just loved me from afar for many years. It was just over 20 years after we graduated that we went on our first date. We married 7 months later. It was a whirlwind and we were like young, passionate lovers. Then my illnesses began to break the surface. I've had 7 surgeries during our marriage, the last 5 have been during the past 7 months. We will be married for 7 years coming up in March. He's takes care of me. He takes care of my soul, my heart, my well being and my whole world. My brokenness runs deeper than just my illnesses. My spirit is broken most days. People were drawn to me. They use tell me they loved my bubbly personality and the gleam in my eyes. They loved my smile. Now, that bubbly personality has faded and the gleam in my eyes has dimmed. I'm not sure how to get it back. For so long, I've tried to figure out how live with my brokenness. Some days I wonder how strong I can be, then I remember how loved I am. Their love gives me the strength to carry on. Those who love me remind me how beautiful my life really is. Even with my brokenness, my illnesses, my faded spirit and my pain, my life is absolutely beautiful. I'll still cry. I'll still have days of unbearable pain. I'll still have many doctors appointments. I'll still smile behind the pain. I'll make new dreams. I'll hide behind makeup, a cute outfit and I'll keep pushing on. After all, I am beautifully broken and chronically fabulous. |