Beautifully BrokenCHRONICALLY FABULOUS & BEAUTIFULLY BROKEN Beautifully broken like shattered mosaic tiles. My outside scars will show you that, but there are even more scars that you can’t see. I’ll admit there are many times when I struggle the most with trying to be in control of it all. I have to continually ask God to forgive me because I find myself investigating my illnesses, demanding answers and being disappointed, more than I spend time praying. Being mindful and focused is my job. I should seek Him first with much more faith than I want answers for, and that is what I’m commanded to do. I am commanded to have complete faith in Him. When I do, it doesn’t mean things change, but it changes how I perceive them, and the peace it brings comforts me. Ephesians 6:10 ”Finally, be strong in the Lord and in His mighty power” I am chronically fabulous and beautifully broken. Most days I find that my faith is mediocre. Once in a while I’ll find my faith wonderfully restored and on those days I feel at peace with the cards I’ve been dealt. I cry a lot. If you ask most people if they know when was the last time they cried, they will say I don’t remember or it was months ago. If you ask me, I’ll tell you, it was last night while I was taking a hot bath; my alone time. I’m actually terrified. I’m scare because of all my health issue. I’m afraid I’ll die at any moment. I’m nervous at what the doctor will tell me my results from my autonomic testing. My appointment isn’t until December 10. Three doctors said the results were serious and severe but no one has explained it in more detail. I have these irrational fears. Nightmares consume me when I finally fall asleep. The nightmares are so vivid, even my therapist was somewhat distraught. These are the name of my scars: Chiari Malformation Intracranial Hypertension Ehlers Danlos Syndrome PTSD Chronic Pain Fibromyalgia Severe Anxiety & Panic Attacks Chronic Migraines Headaches EVERY Day Interstitial Cystitis Cardiovascular & Cardiovagal Sympathetic Failure Severe Autonomic Neuropathy 4 Brain Surgeries 12 Surgeries in 2 years time I’m just about to turn 50 but my body feels like it’s 90. It’s all so emotionally and physically exhausting. I feel like I’m trapped behind the glass wall of an aquarium. Life is hustling and bustling by but I’m stuck behind that glass under water. I can hear them talking but they can’t hear my cries. Will someone please break the glass and free my from this aquarium prison that is my world?
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I'm just a ghost in this world, only a shell of who I used to be. I talk a lot about my chronic pain in my blog but rarely do I talk about my anxiety, panic attacks or depression.
Lately my anxiety has gotten the best of me. My depression has entangled me in a web of sticky, clinging strands that I can't escape from. It feels like a straight jacket of spider webs encasing me. The more I try to escape, to wriggle free from the trap, it gives the anxiety and panic attacks more ammunition to know I'm there stuck in its web and the 'spider' closes in on me waiting for me to collapse in fear. I feel like I'm drowning. It's like I'm trapped in an aquarium behind the glass and all I hear are the muffled sounds of life going on around me and no one can hear my cries for help. When the panic attacks hit, it's like I'm stuck on the train tracks and I can't move. I see the train rushing towards me but I'm frozen in fear, just waiting for the impending crash knowing I'll die when it runs me over. I used to enjoy life. I remember the times when my life was so carefree. I would go out dancing all night long. I loved dancing. There were summer nights when I'd go to the oceanfront and walk the boardwalk listening to the live bands play on the streets. I was so confident and didn't care what others thought of me. I'd go out by myself to a local bar just to watch the bands play and get out on the dance floor even if I was the only one dancing. There were days going to local fairs and amusement parks with rollercoaster rides. I'd get on the back of a motorcycle and ride like the wind. I'd take my kids to the beach and ride the waves on boogie-boards. We had so much fun. Then the days of anxiety, panic attacks and depression came in like huge rolling thunderstorms. I remember one day, heading to the beach in a convertible with the top down, my anxiety was so high and depression was so low. We had the kids in the back and it was a blue sky, sun shiny day. Then these words came out of my mouth without even thinking "Today would be a good day to die". I don't even know why I said it but the words just came out of mouth for everyone to hear. When my anxiety hits, it surrounds me in steel bars that I can't escape from. I reach my arms through the bars wanting to touch the life I used to have but it's out of reach. It's hard for others to understand and it makes me angry when they say "Just take a hot bath and you'll feel better". Well, they don't know that's my secret crying place. Some days I'll take 2 or 3 baths so I can let the tears flow. They think a cup of hot tea will help. Umm, WRONG, hot tea will not help me. My amazing, optimistic husband is the light through my dark clouds. He tries so hard to help me during my darkest days. He thinks I'm probably agoraphobic too. He does all the grocery shopping. I get so much anxiety going out. I don't want to run into people I knew before I became so sick. I don't want to talk to anyone. If we do go out, I get so anxious and so irritated that I say ugly things I don't even mean to say. If I see someone that I do know, then I'll turn around and hide behind a kiosk or some clothing. I spend my days in pajamas 24/7. I have more pj's than I do regular clothes. I rarely get dressed. There are days my anxiety is so bad that I've even cancelled doctors appointments because I just can't leave the house. Most days I don't even open the door to see if it's nice out. My skin rarely gets kissed by the sun. My one saving grace is my grandson. If he's over and I'm having a day of tolerable pain then we can venture out for a bit. He's like my invisible cloak and in my mind, all the attention will be towards him and not me. I'm just a ghost in this world, wandering around searching for the carefree soul I used to have. Most of my days are spent laying in the dark trying to force myself to sleep so I don't have to think about life, so I won't have anxiety but my mind wanders with crazy thoughts. Thoughts that any normal person wouldn't think of. Thoughts of irrational fears and worries. How can I escape this trap? Is there any hope for the carefree days that I used to have? I feel like my old carefree days were nothing but a dream and that dream has turned to dust. I'll never be that person again and it's not fair to my husband or my family. There is an old saying 'Her cheese done fell off her cracker', well, yep that's me lately. I feel all discombobulated. I just want more normal days. I want mores days of smiles and giggles and less days of fear, chronic pain, anxiety and depression. How do I escape this web I'm trapped in? Can someone stomp on that spider that keeps spinning webs around me? Can someone break me free from the bars that I'm trapped behind? I'm meant for a better life than this. I just don't know how much longer I can do it. Can someone break the glass on the aquarium that has me trapped inside? I feel like I'm drowning. I'm a ghost stuck in this anxious, debilitating world and praying I'll be able to live carefree again. I have a friend that visits me every day, her name is Dolor. There are days that Dolor visits me many times an hour. It's exhausting when she visits that much. Dolor is annoying. Sometimes, on rare occasions, Dolor will just visit a few times a day and those are the days I find to be more tolerable, but still twisted. She makes me cry. Dolor has stolen so much from me. I hate Dolor. Dolor lets me know I'm still alive. Without Dolor, I'd think I was dead. I haven't seen a day without Dolor in so long that I wouldn't know what living without her is like. I wouldn't know what a normal day is because Dolor has stolen 'normal' from me. Too often, Dolor kidnaps me and won't let me go, even though I pray and beg for mercy. Dolor steals my days, my hours, my minutes. She has stolen my dreams, my plans, my thoughts. I hate Dolor and I wish I could live without her. Dolor likes to play games. She makes me think I'm doing good and then BAM, she knocks me off my feet. She's kidnapped me from my life. Dolor creeps in like a nightmare, unwanted and uninvited. She doesn't even have the courtesy to ask permission to visit. I just want Dolor to go away, to just DIE; but if Dolor dies, does that mean I die too. I guess I'm stuck with Dolor and I'll never be able to unfriend her. Do you want to know who Dolor is? Dolor is the Spanish translation for pain and that's the name I've given to my chronic pain.
Awake and writing again. Either, I get no sleep and I'm up for days with just brief little naps. Or, its days of sleeping and sleeping and nothing I do can help me stay awake. There's no in between. I'm living in an upside down world. I'm living in the reflection behind the mirrored glass. There's no normal anymore. We are all mad around here. I just want to escape and have some normal days. This is my life of exhaustion, of pain and I can't see the light at the end of the tunnel. I'm blinded by my illnesses and pain. Can anyone hear me? I'm, Angela and I'm Chronically Fabulous and still fighting to have a few normal days. Can someone break that mirror and help me escape? Can someone turn me right side up, so I can escape the upside down world? My cries for help go unnoticed by most of my doctors. Only one has tried to help, but he can't do it all. I need more than one hero. Praying November gets here soon, so I can see my next potential hero. Well, I hope that he will be another true hero who listens and is willing to help. I feel like I'm running out of options.
The pain covers me like Saran Wrap, clinging to me and never letting go. You know, Saran Wrap is clear, but no one can actually see the depth of my pain. It's invisible to most.
The pain controls every aspect of my life. I try my best to hide it and just smile. I try to be the bubbly self I used to be, but it's exhausting. I'm not that person anymore. Life is passing me by because this pain is so controlling. I feel like I'm drowning. I'm suffocating. But, I still wake up everyday to this life of pain. I pray a lot. I pray that I'll have a day of tolerable pain and that it's not too severe. I pray I have a day that the screams don't come out. The screams just come, unconsciously, uncontrollably because the pain gets so bad. People are going on with their lives, their days, the hustle and bustle of world keeps going and I feel like I'm living in a tornado but everyone else is saying 'Come on, it's just a little breeze'. I want to scream at them and tell them it's more than a breeze. It's a huge storm on the horizon and I'm desperately seeking shelter from the pain. I want to rip off this Saran Wrap that's clinging to my body, my pain, clinging to my soul and suffocating the enjoyment from my life. I want to enjoy life again. Enjoying life, truly enjoying it, is a thing of the past. I miss my life. I miss who I was before the pain became so controlling. Heck, I'm a control freak. I love being in control but this pain is winning and I'm losing. It's slowly suffocating me. It's snuffing out my passions, my dreams, my inspirations. How do I release myself from these cards that have been dealt to me? How do I start winning again? Can we just call it a draw, a tie and start over? Can we start a new game called life? I feel like I'm being pulled under, like I have cement blocks on my feet. I'm trying desperately to maintain my level above the surface of stormy waters. Waves of pain crashing over me. The rip tides pulling me further out. I'm drowning in this sea of pain. I keep saying to myself, 'You just need to keep your head above water and you'll be ok'. Some days, treading water just isn't enough and I get pulled under. Can anyone hear my screams for help? I just need a doctor to be my hero. I have one doctor at UVA, that's helped me more than any other but when you have illnesses like mine, you need more than one hero. So, I guess I'll continue to tread water, with this Saran Wrap clinging to me for now and fight the pain every day. After all, I am Chronically Fabulous and I still wake up every morning. I never thought this would be my life. I'm only 47 and pain has taken over my life. It's all I think about. It's how I plan my days, my hours, my minutes. I have to plan around my pain. It's not fair. I should be enjoying life. I should be having fun. I shouldn't be scared to make plans because of my pain.
Pain, chronic debilitating pain, is a tough journey to be on. It can be so lonely. I cry almost every day. This is my life. These are the cards I've been dealt. I want to do so many things. I want my dreams to come true, but they can't. I want to enjoy the things I used to do. Now, my dreams are no longer dreams. I live in a nightmare of pain. I cry alone in the bath. I scream out in pain daily. I try not to complain about my pain, but when my family and friends want us to make plans, I have to remind them, I'm not who I used to be. I used to love going to local fairs and events, going dancing, kayaking, going to concerts and walking on the boardwalk listening to local bands. I loved cooking and shopping. But, now pain controls everything. It sucks. I'm a control freak and I can't control this. I just pray that one day I'll find a doctor who will be my hero and help me to have more tolerable days of pain. I won't ever be cured and pain will always be a part of my life. I just want tolerable days so I can enjoy more things. I'm Chronically Fabulous and I'm praying for a hero. 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. 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. Life keeps rolling along. Just like the tides. It won't stop, even when we are in the most severe pain.
Some days the pain comes crashing in like a tidal wave and other days the pain can be tiny little ripples in the water. You know, just enough to let you know the pain is there and it will NEVER go away. This is my life, my illness and it will continue to progress. When you feel like you're drowning in a sea of pain, just lay back and float for a while. It's ok to just be and do nothing. It's ok to cry and scream. Some times there will be rip tides that take us to the deepest depths of the sea of pain. Those are the times when we need our family, friends and loved ones the most. Those are the times we need people to understand that sometimes we need their help and sometimes we need to be left alone. Those are the times we usually end up in the ER or hospital stays. It's ok. It will pass. We just have to wait it out. We just have to wait for a good day. So, ride out those waves on your good days. Enjoy them. Push yourself to do something you love. Even if it's only for an hour or so. There will be good days. I promise. After all, we are CHRONICALLY FABULOUS and we are living this chronically fabulous life. The process of creating music has evolved over time and so has the way we deal with treating and living with an illness. We've developed more words, fine tuned a melody, and stacks of Marshall amps that go to the heavens; the urge to express ourselves in a song remains as strong as ever. Just as in the medical 'chronically ill' world, we have developed more words for medical terminology and new disease processes, more fine tuned medical devices and testing, and stacks of medical records that, if laid out, could be a mile long; the urge to express ourselves, our chronically ill selves, has remained strong just like a great country song tells a emotional story or a screaming heavy metal song has lyrics of pain.
We escape into a world all our own and this is what we have in common with music. Music allows everyone to escape into the world of the one writing the lyrics, wether they are healthy or in the deep stages of an illness. There's been studies that have shown music can reduce pain. Please, if you haven't tried music therapy, I implore you to just give it some time in your life. Music can help to ease pain. It can help us express ourselves. I'm not a musically inclined person. I can't sing a lick but I will still belt out the lyrics to my favorite Adele songs or sing the whole album of Pink Floyd's greatest hits on repeat. I love music and how the artist express themselves. It's life in tune. It's life in a wonderful melody that really can help to get my mind off my pain. However, there are many songs that make me cry. I mean big ole' ugly crocodile tears. One song that comes to mind right now is 'Her Diamonds' by Rob Thomas. He wrote that song about his wife whom he loves so deeply and she suffers from a chronic illness. It reminds me of how much my husband wants me to feel better, to have less pain. I'm very lucky to have a man like that in my life. I have so many days of severe moodiness because of pain, frustration and despair but he stays by me, for better or for worse. He is my hero. My strength and my world. I have Chiari Malformation, Idiopathic Intracranial Hypertension and Fibromyalgia and I live in pain daily. I would give anything to have my wild, carefree and painfree days back but these are the cards I have been dealt and I need to learn to write my own lyrics to live in this world of chronic pain. A melody of pain, life, living, of being strong and not giving up. Music helps me get through some of my bad days. It gives me strength and hope. I spend a lot of time in a hot bubble bath with my iPhone and Bluetooth speaker listening to my eclectic selection of music on shuffle. Many tears are shed during those bubble baths. It's my personal time to cry and let go emotionally. It's my time to truly listen to the lyrics and the meaning of a song. We all have a song and a plan in us and our lyrics are different; though some may be similar. My plans and song might not include your lyrics. I pray we all find our music to let our souls dance and sing to escape even the tiniest bit of pain or sorrow that comes with living in a chronically ill life. So, put on a pair of headphones and escape into the world of the amazing lyrics. After all, we are chronically fabulous living in this melody of a chronically fabulous life. |