Is this my life?
I was only having headaches. Then the headaches and the disease had me. Illnesses usually have scary and abrupt symptoms. It's a fever, dizziness, a fall, a cough and then a visit to a doctor. That's not my scenario. My illness came in the way a spring breeze does, a nice slow warm breeze, then suddenly like a spring thunderstorm, loud, dark and scary. The earliest I can remember having headaches was as a teen. My mom used to say "You're too young to get headaches." I suffered many years with the headaches. They were really my only symptom for a while. My childhood was amazing. My high school days were a blast. I partied, had great friends, didn't have to study hard, talked a lot in class, and apparently I was a nice distraction to the boys (from what I'm being told now). I graduated in 1987 with extra credits and went straight to college. My amazing and beautiful daughter was born in 1989 and I was a single mother for 5 years. I lived my life with joy and enthusiasm and headaches. The headaches were tolerable but they were there and they were often. In 1991 I found out about bulimia because a man, my boyfriend, my fiancé, told me that I was fat and if I made myself throw up then I would lose weight. I was 5'2" and 132 lbs when he said that. I never had body issues before. He was abusive, controlling and scary but eventually I woke up and worked up the courage to leave him. My bulimia continued. It was a part of me. I married someone else in 1994. My bulimia slowed but it was still there hiding in the shadows. In 1995 I had an amazing, strong-willed, intelligent and handsome son. I had a difficult pregnancy with him. When I was 5 months pregnant I walked in on my 5 year old daughter being touched inappropriately. We were visiting with someone and she was playing on the computer with the man who owned the house and when I walked in I saw him touching her. Anyway, I don't want to get into that long story. My daughter has grown to be a strong forgiving woman. I, however, struggled with not being able to protect her. I went into full blown bulimia setback. I was pregnant and binging and purging 15-20 times a day. I went into premature labor several times but they were able to stop it and on a crisp Autumn day, he arrived one day late. We were lucky that our son was born healthy. After giving birth I continued with the bulimia, binging and purging up-to 30 times a day. My husband at the time would knock on the door and ask if I was doing 'number 3', meaning throwing up. He even told me to put a picture of him and the kids on the back of the toilet so that I would see their faces when the urge to purge hit me. I got so thin. It was my way of trying to control things. Eventually, I entered in to an eating disorder clinic but I was still able to hide it and lie about it. Bulimia is a dark shadow following you around for the rest of your life. It's soul sucking. I wished I could've been Peter Pan at the time and lost my shadow but it was my 'security' blanket, my control and I wanted to keep it. My headaches got progressively worse. Emergency room visits for the headaches were a monthly to do item, heck, sometimes weekly. Eventually, the frequency of the headaches were too much so I made an appointment with a neurologist and was placed on numerous meds to help ease the pain. He said it was migraines. I saw my PCP and told her about my bulimia, headaches, and depression. She put me on so much medication...too much. The medication changed who I was. I wasn't me anymore. It truly changed my personality, it changed me in to someone I didn't even know or want to be. My inability to forgive the man who touched my daughter, my inability to control my bulimia, and my depression and my husbands inability to support, understand and comfort me ruined our marriage. We divorced in 2003. The divorce took a toll on me. I was lost for about 6 months. It was 6 months of, as one friend put it, 'floundering like a fish out of water'. Then I snapped out of it. I stopped all the meds my PCP put me on. I went back to school to work in the medical field. I worked hard and was at the top of my class. Graduated Magna Cum Laude in 2007. I wanted to be perfect. Then the moment I decided to forgive the man who violated my daughter and to not let him control my life, was the moment I began to truly heal. It was then my bulimia started to get under control. I was distancing myself from that dark shadow. Forgiveness isn't for the person who did you or your family wrong, it's for your own inner peace. You know what, I had even kept the outfit she was wearing when it happened. I don't know why I kept it. It was tucked away deep in the back of a drawer for years. It was like I was holding on to that little innocent girl. The moment I decided that man couldn't and would no longer control my life, my worries, my emotions, or my fears anymore and when I had forgiveness in my heart, that's when I let it go. I donated that outfit to a child in need and I still remember what it looked like. In 2007 I started noticing new symptoms. I was working in the cardiovascular field at a local hospital. I was running into things, having dizzy spells, and the headaches changed. They were getting worse. I started noticing that when I laughed I would get excruciating pressure at the base of my skull. I just blew it off and tried to live my life. Laughter was still a part of my life. I mean, I would still laugh but not as hard or as long. Eventually, I would remove myself from the funny situation just to ease the pain and slowly over the years I would stop laughing completely due to the pain. Funny thing about those days is, I received a gag gift. I was given a pink helmet because I was always running or bumping into things and they wanted me to protect my head. I stopped working there in 2011. That pink helmet is still there and I hear they bring it out every now and then when someone is being clumsy and they laugh about it remembering me. In 2009 I met the man of my dreams and we married in 2010. He noticed I was constantly stumbling, tripping over my own two feet or tripping over nothing. He noticed I would lose my balance just standing still. It happened so often he nicknamed me Ms Tipsy. I also started having severe neck pain. At this point, I still hadn't taken the time to put all my symptoms together or even seek medical advice. I was just trying to enjoy my life and if I stumbled or lost my balance we would just giggle about it and he would say 'Ms Tipsy' in a long drawn out way...'Msss Tipsaaaayyyy'. In 2012 more symptoms showed up. I was having heart palpitations. They would get so bad that my autonomic system would make me cough to try and correct it. I sought out the advise from cardiologist and was told it was harmless PACs (premature atrial contractions). Ok, as long as they are harmless, I thought. But they were so bothersome. My heart would beat so fast. I had one of the best, most joyful things happen in 2012, I became a grandmother to an amazing little boy. Being a grandmother is a different kind of love. It truly is. Also, in 2012, I had dropped down to part-time at work because my body couldn't handle working full time. It hurt us financially but I just couldn't do it. My body was failing me. Calling out sick from work because of my pain was happening so much, it was just more logical to try to work 2-3 days a week so my body could recuperate from the days I worked. The year 2013 was when even more symptoms started to come at me from all directions. The neck pain and headaches were worse and I sought the advice of an orthopedic surgeon. He diagnosed me with Cervical Kyphosis. A straightening of the cervical spine. He prescribed muscle relaxers and physical therapy. I hated taking the muscle relaxers. They made me like a zombie. Eventually, I stopped taking them and finished up my PT. My mood swings were horrible because of my pain. The pain exhausted me. Then comes 2014, the dizziness was so severe that I couldn't get out of bed for days. I called out a lot from work. Low back pain would make it impossible to walk more than a few steps or stand up straight. I would get tremors in my hands. They would last for days. The headaches were so bad and so often I couldn't talk or move my eyes. That is when I decided to see another neurologist. He ordered an MRI but said the results were 'normal'. I'm so tired of all the, so called normal tests, when obviously something is wrong, seriously wrong. I made sure I got a copy of the films. He diagnosed me with severe central sleep apnea. It's different than the normal obstructive sleep apnea. This is when your brain forgets to tell your lungs to breathe. He put me on a CPAP machine to wear every night. Ugh!!! I look so sexy in that contraption, at least that's what my amazing and supportive hubby tries to tell me. I continued to visit the ER for headaches and neck and back pain. More symptoms started popping up. Memory issues. Speech problems, I would get my words mixed up. Sometimes I wouldn't remember driving home from work. I'd forget the names of the doctors that I've worked with for 3 years. I would forget, within seconds, what they wanted me to hand them or what meds to give a patient and I would have to ask them, several times, 'What was that again?' People would talk about things we did and I would have no recollection of it at all. My heart palpitations would make it impossible to work, to clean house, to do anything. My dizziness continued to get worse. I am dizzy everyday. I was having hearing issues. I remember asking doctors, or anyone, 3-4 times 'What did you say, I can't hear you'. There are days that my pain is so bad that I can't even hang out with my grandson, or have to cancel plans with him. He's 3 and he thinks I'm a superhero, Super Grandma. Those are the saddest days. I love that little boy so much. There are days the pain is so bad that I don't even complain about my husbands driving if we have to go somewhere. Now, anyone who knows me, knows my pain is bad if I don't say one word about his driving. I used to have this bubbly personality that everyone was drawn to but in late 2014 people started noticing a change. I wasn't me anymore. The sparkle was gone from my eyes. The pain started to change me. It changed me into a lump on a log with no life, no livelihood, no smiles and little to no laughter. The laughter was slowly leaving my soul. It was getting too painful to laugh. So, now it's 2015. In January my husband and I were on vacation with my parents. We were playing Heads Up. It's a funny game and we were all laughing. I told my mom I needed to stop laughing because I was getting this pressure headache at the base of my skull. She said 'That's not normal'. I told my mom that it's one symptom that I've never told my doctors about because I thought all people get them. We decided to Google 'pressure at the base of skull when laughing'. On the first Google page, a few rows down was a link to Chiari Malformation. I clicked on the link and read about it. Then I checked on more links and even YouTube videos. I was floored at how similar my symptoms and my life was like compared to Chiari. My mom was shocked. I told her that when I got home I was going to look at my MRI from 2014. I was in pain the whole trip. I tried my best to not complain and tried to enjoy it. Between the headaches, back pain, neck pain and dizziness it was difficult. I was also having weakness, numbness and tingling in all my limbs. Especially my hands. Even with all my pain I loved the trip. The mountains were beautiful. When we got home I didn't even unpack. I went straight to the computer and pulled up my images from my MRI. I had already researched enough while on vacation to know what a Chiari Malformation looked like compared to a normal MRI. My heart stopped. My eyes filled with tears. I could see that the bottom part of my brain was compressed. It was pushing on my brain stem. It was plugging up the base of my skull. I could see this and I don't even have a 'trained' radiologist eye. Chiari isn't taught in medical school and lots of times radiologist miss it. Here is just a little excerpt of what it is: Chiari malformations (CMs) are structural defects in the cerebellum, the part of the brain that controls balance. It's a neurological disorder. Normally the cerebellum and parts of the brain stem sit in an indented space at the lower rear of the skull, above the foramen magnum (a funnel-like opening to the spinal canal). When part of the cerebellum is located below the foramen magnum, it is called a Chiari malformation. CMs may develop when the bony space is smaller than normal, causing the cerebellum and brain stem to be pushed downward into the foramen magnum and into the upper spinal canal. The resulting pressure on the cerebellum and brain stem may affect functions controlled by these areas and block the flow of cerebrospinal fluid (CSF)— the clear liquid that surrounds and cushions the brain and spinal cord—to and from the brain. There is no cure! Surgery can help slow the progression but it won't cure it. I immediately began searching for support, for the top docs in the nation. I came across the top neurosurgeon for Chiari, Dr Bolognese, and made contact with him. He reviewed my images and symptoms and said he would love to meet with me to see if he could help me. The only problem is, he is in New York and I'm in Virginia. My insurance doesn't cover for me to go out of state. Facebook lead me to amazing support groups. On Facebook, I found a welcoming sick ward of fellow-suffers and I started to live there. I was with people like me. People who understood me. People to support me. My new fellow-sufferers whom I call my Chronically Fabulous friends, have helped me so much. They can tell me which docs are good and which docs to stay away from. They help me decipher my symptoms because they are living with them too. I've seen 3 local Neurosurgeons, none of which are Chiari Specialists, and each one had something different to say. One said my Chiari wasn't herniated low enough to cause symptoms. One said 'you don't have Chiari' because it's not low enough. One finally, diagnosed me with Chiari 0. The local NS that diagnosed Chiari 0 said he doesn't think he can help me and he thought surgery wouldn't improve my symptoms. He has pretty much dismissed me as a patient. Surgery for Chiari is a serious one, it's brain surgery and it's scary. It also doesn't guarantee any relief. Less than 50 percent find relief. More symptoms have plagued me. Double vision, blurry vision, sporadic stabbing pains throughout my body, ringing in my ears, trouble regulating my body temp (I'm hot all the time) and left sided weakness. There are even days when my body feels like it's tired of breathing and that scares me. I was at work at the hospital when my left leg weakness took its toll. I was sent home because it wasn't safe for me or for me to take care of patients. They didn't want me to fall or drop a patient. That was July 16th, it is now September 21st and I have yet to return to work. I've had other tests done to try and figure out the weakness but they come back normal or with just minimal irregularities. Some of the other tests I had done confirmed diminished flow of the cerebral spinal fluid that goes around and protects my brain. It can put even more pressure on my brain. You know, I get these thoughts of how it would be if I just didn't wake up or if it could just all end. I'm in pain 24/7. Some days are good and by good, I'm mean I'm having a day of tolerable pain. It's still pain, none the less, but it's tolerable. There are days when my mom calls and wants to take me shopping but I have to refuse the offer because my pain is too much or the dizziness is bad. The worst days are the days I'm in too much pain to see my grandson. One of the saddest things in my journey to fight this chronic illness is the loss of my friends. It seems that when I became progressively worse they disappeared. I no longer call them my best friends, I now call them my Houdini friends. I did nothing all summer. The heat was too much. If I was out in it for more than a couple of minutes the pounding in my head would be unbearable. It was so intense. It was instant. The sporadic pain throughout my body hits me like knives stabbing me. It can happen anywhere on my body. It is debilitating. This last week, my bulimia came back. That dark shadow has stuck itself to me again. It has crept in ever so slightly, back in to my life through the cracks of my broken body. It's just here once or twice a day to say, 'Do you remember me?' I just feel so out of control. I can't control this chronic illness, my Chiari. I want some kind of control. I mean, bulimia, is a chronic illness, in and of itself but I can control it. I've had it since I was 22 and I know it well. I'm an expert at controlling it. I just can't control Chiari and that leaves me searching for order in my life. This last week has been bad. My dear Aunt, my dads sister, passed away from a major Stroke. She lives in Texas and I wanted so badly make the trip out there but my mom knew my body wouldn't be able to make it. I would be in terrible pain. They drove straight through,19 hours, to get there. I'm glad they made it there before she was finally called home. I had an appointment with a new neurologist. He was very thorough and he seemed concerned about my left sided weakness. It's funny, how you can get so overjoyed about a doctor being concerned at one of your symptoms. I thought to myself, 'Finally, someone is hearing me.' The neurologist was also interested in my memory loss and ordered an EEG to check my brain waves. I felt blessed when I left his office. That same day I went to my PCP to have him fill out my short term disability paper work and he refused. It was like a bullet to my heart or my head for that matter. I just couldn't understand it. My work provides this to me and I don't know why he refused to fill it out. I have no money coming in and my husband doesn't make enough by himself to make ends meet. I also spoke to my PCP about what my NS said. My NS thinks I might have fibromyalgia too. Well, my PCP touched the trigger points to determine Fibromyalgia and said 'Yep, you've got fibromyalgia. I'll write you a script for Flexeril and take it 3 times a day and your fibromyalgia will be gone in a week.' Is he crazy? Did I hear that right? I feel like I'm hitting dead-ends and brick walls. Why am I not being heard, yet again? Fibromyalgia doesn't just go away. I left his office in tears, all the while, my left leg was giving out and making it difficult to walk. It's exhausting to walk distances now. He wouldn't even write a script for a cane or walker. He even saw me walking and asked 'What's wrong with your leg, is it asleep?' I'm surprised I haven't fallen yet. I'm guessing all these years of being off balance and being the true Ms Tipsy has helped me know how to not fall. Well, I have fallen a few times but haven't hurt myself yet. Living with a chronic illness takes skill. It takes courage. I'm afraid to fall asleep because of my central sleep apnea. Everyday I just make sure everyone knows how much I love and appreciate them. Living with chronic pain takes faith and more faith, that maybe tomorrow will be less painful. My only friends now are my 'Chronically Fabulous' ones and I love them. I mean, I have one or two, friends that contact me once in a while but not like it was before...before I became Chronically Fabulous. It's depressing having only 'sick' friends. Since there are no Chiari Specialists in Virginia, I'm having to fight with my insurance to go to North Carolina to get to a specialist there. They set me up with a case manager and she has done the foot work for me. I can go to Duke but I need to send my records to the NS first to see if he is willing to help me. I pray he can. My quality of life is diminishing little by little everyday. I'm not ready to give up but I am exhausted. Pain is exhausting. Frustration is exhausting. I'm getting progressively worse. The symptoms are suddenly so overwhelming, I'm not sure how much more my body can handle. There's no more hiding this even though it's considered an 'invisible illness'. An invisible illness is when people think you look great and you don't look sick but inside you're dying. Your pain is real. I'm living a true Spoonie Life. If you haven't read The Spoon Theory please take a moment and google it. It will give you a better understanding of what living with a chronic invisible illness is like. Pajamas are my new attire. I'm in them everyday. It has been this way for months. The best gift to give someone with a chronic illness is a cute pair of pajamas, lip balm and a soft blanket. Most people haven't even heard of Chiari. Most are misdiagnosed for years like I was. I was misdiagnosed for over 20 years. You never know if someone you love will be diagnosed with Chiari or another type of chronic illness. There isn't enough awareness about it. There's not enough research or knowledgeable medical staff. The symptoms of Chiari can kill. Spread awareness. There is beauty and a silver lining in my life. The beauty is everywhere. It's in the way a spider spins it's web. It's in the way a toddler laughs. It's in the way it smells after a rainstorm. It's in the way my husband looks at me and tells me I'm beautiful after I wake up in the morning with my hair all a mess. When your diagnosed with a chronic illness you eventually start to see things a little brighter, even through all the dead-ends and brick walls. You see things shining through the dark clouds of pain. You don't take any 'good' moments for granted. If I have a good day, a day with tolerable pain, then I get the house tidied up. I visit with my grandson. I cook. I love to cook. We might even decide to take the kayak out. Now, granted, it's a two person kayak and my hubby does all the work but it's beautiful out there on the water. I take lots of pictures. I want to be able to look back and remember the good moments. By now, I've come to realize those good days come at a cost but it's totally worth it to me. If I take advantage of the tolerable days and do things that require a lot of energy, I spend the next few days making up for it. But, you know what, I wouldn't change it for the world. I'm so blessed to have the good days even if they are few and far between. I love my life. My life is beautiful despite my illness. The title of this post is 'Is This My Life?' Yes, it is my life. My chronically fabulous life. It's the life I've been given. The Lord has a plan for me. I'm not quite sure what it is but I have a strong feeling part of it is to share my story, my journey. Maybe I will touch someone who has these symptoms. Maybe I will help someone to seek out the right doctors. Maybe I will inspire someone to not give up and to keep fighting. Maybe it will help people be more understanding and less judgmental. After all, I am Chronically Fabulous and I'm living this Chronically Fabulous beautiful life.
6 Comments
Do you know what 'Drop the curtain' means? The End. Finished. It's done. End it. Those are the thoughts that crossed my mind the other day after I left my primary care physicians office. His refusal to fill out my short term disability paper hit me like a bullet to the heart or to my head for that matter. He said one of my specialists should fill it out but my specialist said that my PCP should. I don't know who will end up filling it out. My Neurosurgeon thought that I might have fibromyalgia and told me to see my PCP about it. I spoke with my PCP about it and he did in fact diagnosed me with Fibromyalgia and was reluctant to even do that and said 'I'll write you a script for Flexeril and your fibromyalgia will be gone within a week'. What? Was he even serious about that statement? He didn't even refer me to a rheumatologist. My heart was beating so fast at that moment and tears were streaming down my face...another brick wall. I've had no money coming in for 2 months, bills are late, cut off notices are in the mail or on the door knob. My hubby is trying so hard to do side jobs to get the bills paid. But it's still not enough. I work at a place that's offers me short term disability and I pay a little extra for long term (or is it the other way around), heck it don't remember, but either way, I'm offered it for times like I'm in now. Immediately after I left my PCPs office I cried and cried and the thought came across my mind again...to end it all, to 'drop the curtain'. I thought to myself, 'Will my life insurance policy help pay our bills that are so late now?' Why does this thought creep into my mind? One in ten suicides are related to a chronic illness. I understand. I understand the desperation. The desperation someone must feel at that moment to follow through with it must be so strong. I could never follow through with it. I could never break the hearts of those who love me by being so selfish. I could never disappoint God like that. I don't want to commit that sin. But, the desperate thought enters my mind every now and then. At this point, I'm not even thinking of the pain I endure every day. I'm thinking of the dead ends, the brick walls. When the thought of ending it all invades my mind I try so hard to push it away. I think to myself 'I was given this life because The Lord thinks I'm strong enough and if I have enough faith then He will provide'. I think of my amazing family and my adorable grandson and I have to keep fighting. I get so desperate and exhausted fighting this 'Chronically Fabulous' life. When I feel desperate and feel cornered, like theirs no escape, I have thoughts that I don't want to have. I'm at a point now, in my illness, that I feel like maybe at lease 1 doctor, a Neurosurgeon, is listening a little. He did confirm my Chiari but, yes there is a but, he said he can't help me. I'm also going to a new neurologist and he was extremely thorough at my first visit this past week. He noticed how weak my whole left side is. Maybe he can bring some more insight into what's going on. He has ordered a EEG to check my brain waves. On a brighter note, my insurance case manager contacted me about a NS at Duke and he is in-network. I'm sending my records to him at Duke and he specializes in Chiari and even in Chiari 0, which I have. I pray and pray he can help me. He will look over my records and get back with me if he thinks he can help. Also, after I got home from my non-helpful PCPs office I sought the help of a great friend who is a chronic illness sister. She gave me the name of a Rheumatologist but he's 2 hours away. At this point I don't even care. I'll drive cross country if I need to. I called his office and got an appointment but it's 3 months away and I have to be there at 7:30am. I told her 'At this point I'll come at anytime, even at 6am.' Oh, well, more long roads to go down. Maybe he can help with the fibromyalgia. Just thinking of all the co-pays and money for tests that we've paid for to see doctors that can't even help, makes me sick to my stomach. My hubby did start a gofundme account to help get me to North Carolina. I've had 4 friends donate and a few share it on their page but it's still not enough to get us there. I have to have faith that God will provide. I have to have faith that the NS at Duke will see me. If he cant then I'll have to pay out of pocket to see another NS in NC and they already said I could come for an appointment but the first visit is $900. I've been hitting so many brick walls and dead-ends. The climb is hard and I can move mountains. Maybe not as fast as I'd like but I have The Lord on my side. I'm not giving up this fight. I'm not going to 'Drop the curtain'. My wish today isn't for me it's for those who also have Chiari and other chronic invisible illnesses. My wish for you is that you woke up today and opened your eyes. My wish for you is that you took a deep breath in. My wish for you is that you have someone to love. My wish for you is that someone loves you deeply especially through your bad days. My wish for you is that you were able to step outside, even for a small minute, and see how beautiful the world is. My wish for you is that you had a second, a minute, an hour or even a whole day with little to no pain. My wish for you is that someone is listening to you and truly hearing you. My wish for you is that you smiled today. My wish for you is that you laughed or even giggled a little today. My wish for you is that you found joy in something small, like watching the way a spider spins it's web or a bird soaring high. My wish for you is that you read something that brought you insight and wisdom. My wish for you is that you had time to rest when you needed it. My wish for you is that a friend texted, called or maybe even visited you today. My wish for you is that you got a hug today. My wish for you is that you know there are people rooting for you. My wish for you is that you know you are loved. My wish for you is that you know you are strong, you are beautiful and you are amazing. My wish for you is that, even on the darkest days and toughest battles, you are a blessing. My wish for you is that your good moments pass slow so you can enjoy them more. My wish for you is that you know I love you and I care. My journey fighting a chronic illness, fighting Chiari. I won't go into detail about the pain I've suffered along the way for so many years. I won't go into detail about the many doctors who have misdiagnosed me over the years or the numerous meds and treatments they have given me for the 'wrong' diagnosis. I'll just start with today. This morning I woke up and I have Chiari Malformation. I was born with it and I'll have it for the rest of my life. I'll have it until the day I die. This morning I woke up with my normal bad headache and I was exhausted. I was also very sad. My Aunt had passed away a couple days ago and I had an obligation to fill. I wanted to put together a memorial video of her life. This morning I woke up and had to push myself to get the memorial video done. I love being creative. I love music. I love putting pictures together with the music but this was a sad time. It turned out beautifully. This morning I woke up and had trouble walking. My left leg kept giving out. All my nerve 'tests' come back 'normal'. They don't know why it keeps giving out. Chiari causes many symptoms because it is a NEUROLOGICAL disorder. This is what upsets me about the so called tests coming back 'normal'. Well, my leg giving out is not normal. I need a true Chiari Specialist and there aren't any here in Virginia. This morning I woke up hoping for a call from my insurance case manager and praying for good news. I pray she can find me a 'true' Chiari specialist. This morning I woke up and was dizzy. It takes me so long to get my bearings. The dizziness is debilitating some days and I can't get out of bed. It makes it difficult to drive. This morning I woke up and my back hurt. It made it even more difficult to walk. This morning I woke up and had to go to the library to print off some paperwork because our printer isn't working. I tried to walk 'normal' without my leg giving out but that's just too hard to hide. It wears me out to walk too far when my leg gives out so much. Maybe I should talk to my doctor about getting a handicap tag. This morning I woke up and thought about how I was going to use my 12 'spoons' for the day. After all, I am living a Spoonie Life. If you haven't read the Spoon Theory please take some time google it. This morning I woke up and it took 2 spoons just to get out of bed, 1 spoon to shower, 1 spoon to get dressed, 1 spoon to drive to the library, 2 spoons to walk from my car into the library, 1 spoon to get to the computer to print, 2 spoons to walk back to my car, 1 spoon to drive out to my parents to get more pics for the video, 1 spoon to have the energy to look for pics, 1 spoon to drive back home...am I out of spoons yet? Do I have to borrow from tomorrow's spoons? I haven't even thought about dinner, or the dogs (we are watching my parents dogs so they could go to Texas for my aunt), or the chickens. I can't expect my hubby to do everything but you know what, he does it anyway, without complaining. He ended up taking me to this nostalgic drive-in diner and when we got home I used up my last spoon taking pics of our chickens. The chickens bring us joy and it's so relaxing to watch them. This morning I woke up knowing I needed to spread more awareness about Chiari and chronic illnesses. There isn't enough known about Chiari and the effects it takes on your life and the people who love you. There aren't enough true Chiari Specialist and there aren't enough knowledgeable medical staff to treat us in the ER when we have intolerable pain. This morning I woke up knowing I have an invisible illness. I realize that I might not 'look' sick but I am. I'm very sick. This morning I woke up thanking God for waking me and that my Central Sleep Apnea didn't kill me in my sleep and that my heart arrhythmia didn't stop my heart. This morning I woke up praying that this has all been a nightmare. I do this a lot. I think I'm mostly scared for my dad because he is scared for me. He gets defensive when I talk about Chiari. He doesn't mean to get upset when I talk about it. He wants it to be something else so badly. He doesn't like hearing about it. I think he is so scared for me and that's why he wants me to look for other reasons I'm having these symptoms. He loves me so very much. I have severe low back pain and he really wants that to be the answer. He wants it to 'only' be my lower back because it's not as scary as my brain having issues. I love him for that and I know if he could take it away he would. My mom is stronger at listening about my pain, my worries and my symptoms, or at least she tries to be strong for me. If she's scared for me she hides it well. My kids think I'm invincible and that I'll be ok. They are 27 and 19. My 3 year old grandson thinks I'm a superhero. This morning I woke up praying for a good day. A good day for me is a day of tolerable pain. I'm thankful I had tolerable pain today. This morning I woke up and decided to have my high quality camera ready. After making my Aunts memorial video I realized I need to take more pictures of this beautiful world and my amazing family. This morning I woke up hoping to see that just one of my friends shared one of my social media posts about Chiari. I rarely see that happen. This morning I woke up determined to keep spreading awareness. I wrote this excerpt a couple days ago and I pray more people spread awareness: As I prepare for another day of trying to raise awareness and another day of coping with my chronic invisible illness tomorrow, it may seem somewhat anti-climactic as I've already 'unfriended' and 'unfollowed' many of my social media friends but as I return throughout the hours, days and weeks to raise awareness and to speak of my journey, here is what I ask in addition to your prayers, please encourage me if you see my posts, not just for me but for all who suffer from Chiari Malformation or any other Chronic Illness. Please tag, comment, like and share my post on your social media outlets. Please comment if you have anything kind to say about me or my viewpoint and struggles and if you don't like me, then please still help spread awareness for someone else. You never know if someone you love will be diagnosed with Chiari or another Chronic or Invisible Illness. The majority of my friends have disappeared or just don't know what to say, so they don't say anything at all. It's ok if you don't know what to say. All I ask of you, is to let me know you're still there somewhere and to help spread awareness, click like, share my post, just something, anything. It’s incredibly disheartening to feel alone and like no one cares to listen. And while I know I have the support of my family and a couple of friends here and there, most of those friends don’t vocalize their support on social media. So all I notice is the quietness, like the desert at night or an empty hallway in a vacant abandoned building and I also know there are those that speak negative and discouraging words about me. Please, be a voice by sharing, commenting, liking- if not for me but for the many like me that are afraid to speak about their illness. Social media can spread so much information out there, fast. Please do this so people can hear more than just my voice. If we don’t speak up, they’ll never know! If we don't speak up then awareness won't be made and heard. If we don't speak up and spread awareness then those who have died from Chiari will have died in vain.
This morning I woke up a warrior. Thank you, Angela Parker a Chiari Warrior What was your morning like? As I prepare for another day of trying to raise awareness and another day of coping with my chronic invisible illness tomorrow, it may seem somewhat anti-climactic as I've already 'unfriended' and 'unfollowed' many of my social media friends but as I return throughout the hours, days and weeks to raise awareness and to speak of my journey, here is what I ask in addition to your prayers, please encourage me if you see my posts, not just for me but for all who suffer from Chiari Malformation or any other Chronic Illness. Please tag, comment, like and share my post on your social media outlets. Please comment if you have anything kind to say about me or my viewpoint and struggles and if you don't like me, then please still help spread awareness for someone else. You never know if someone you love will be diagnosed with Chiari or another Chronic or Invisible Illness. The majority of my friends have disappeared or just don't know what to say, so they don't say anything at all. It's ok if you don't know what to say. All I ask of you, is to let me know you're still there somewhere and to help spread awareness, click like, share my post, just something, anything. It’s incredibly disheartening to feel alone and like no one cares to listen. And while I know I have the support of my family and a couple of friends here and there, most of those friends don’t vocalize their support on social media. So all I notice is the quietness, like the desert at night or an empty hallway in a vacant abandoned building and I also know there are those that speak negative and discouraging words about me. Please, be a voice by sharing, commenting, liking- if not for me but for the many like me that are afraid to speak about their illness. Social media can spread so much information out there, fast. Please do this so people can hear more than just my voice. If we don’t speak up, they’ll never know! If we don't speak up then awareness won't be made and heard. If we don't speak up and spread awareness then those who have died from Chiari will have died in vain. Thank you, Angela Parker a Chiari Warrior |