It's difficult for me to be so open about these kinds of things. I think it's important though, so here we go. Once in awhile life sucks. There are teachings based on overcoming struggle that say being negative is not helpful during difficult times. I have read the power of now and loads of other spiritual books that speak on staying present in the moment, questioning your thoughts and maintaining a level of clarity when faced with something that seems hard to overcome. I have endured my fair share of hardships and struggle, as we all have. I have learned to take bits and pieces of ideologies and spiritual practices that feel right to me and utilize them in ways I see fit to help me endure. Sometimes though, you just gotta feel sorry for yourself. I think there is beauty in not candy coating struggles. We are all going through things in our own ways. Pain is pain, no matter what it seems like in comparison to anyone else's. This is a candid depiction of my health struggles.
When I was 16 years old I was diagnosed with Arnold Chiari Malformation Type 1. I have had three brain surgeries. The first surgeon took out too much of my skull and broke one of my vertebrae. The surgeon didn't tell me about the broken vertebrae. My symptoms escalated to the point of needing treatment and after seeing multiple doctors (one who wanted to fuse my spine) I found a specialist out of Wisconsin. He is the one who discovered that my brain was prolapsing out of my skull 6 cm and the broken vertebrae had healed incorrectly and I was then diagnosed with cervical myelopathy (a degenerative disease of the spinal cord commonly found in the elderly). He fixed the prolapsing of the brain and I came back to Michigan. Within a week I felt as though I was dying. Little did I know a concoction of infection was brewing in my brain. 3 different types of bacteria had made their home in my head. I consulted two different doctors explaining how terrible I had felt, both prescribed a dosage of antibiotics and sent me on my way. I remember thinking to myself that maybe I would end up dying because nobody seemed to believe me when I told them how terrible I felt. My condition worsened and I flew out to to Wisconsin to see the surgeon. He did an emergency surgery, explaining how life threatening this was. I was in the hospital for a week on IV antibiotics before being sent home with a surplus of hulk strength antibiotics that I took for the next three months. They kicked the infections ass. I have had strange periods for as long as I can remember. One day I went to pee and I couldn't. It felt like someone was stabbing me. I retreated to the floor, bladder full. The pain became so intense I could not move. My brother and mom carried me to the car and I ended up in the ER. The doctors ran a bunch of tests and found cysts on my ovaries. While explaining to the doctor the intense pain I felt, especially the overwhelming pressure I was experiencing in my lady parts, he laughed. They told me the cysts would burst and it would be fine. I left feeling upset and pretty embarrassed by the whole ordeal. I didn't feel satisfied with this and made an appointment with my doctor. She explained that I did NOT want these cysts to burst and that we would monitor them. I left for Europe a week later. While adventuring Scotland I had such incredible pain in my hip that I could barely walk, sometimes I couldn't walk at all. This entire time I had been an emotional wreck, feeling completely out of control of my emotions. I came back from Sweden and had follow up tests and appointments. The cysts had grown so rapidly the doctors were talking about referring me to an oncologist. Losing ovaries. Cancer. The tests came back negative for cancer and I was diagnosed with Endometriosis. I didn't feel relieved. I didn't know what endometriosis was and after doing research I realized that this was yet another incurable disease that I was going to have to deal with, that may even affect my ability to reproduce. I had surgery to remove the cysts, because of their massive size, they were displacing organs and pushing on my bladder. The surgeon opened me up and realized that one of the cysts had begun leaking and had covered my insides with a thick tar like mixture of blood and endometrium. I had lesions on the inside of my abdomen. He successfully removed the cysts and lesions and managed to save both of my ovaries. I now know that I have stage 4 endometriosis and that putting me into a medically induced menopause is the treatment the specialist sees as the best way to slow down the disease. I have found diet based natural healing treatments and anyone with endometriosis should know these kinds of treatment methods exist and some people fully believe in the success of diet based endometriosis therapy. When you are facing health problems sometimes you have to be your own advocate. You need to research and know what is right for you. I have been mislead, misdiagnosed and let down by so many doctors to know now that they are not gods. You cannot take everything a doctor says as the absolute truth. They are wrong sometimes, probably more than they should be. Sometimes they don't care and sometimes they mock you or make it seem like your symptoms are illegitimate. You are the only one who knows your body. You know when something isn't right and you have to make sure you are getting quality and accurate care. The thing that I hear the most from people is how strong how I am. I am not some kind of phenomenon. We are all far stronger than even we know. We are such resilient beings. Some of us have family members taken from us too soon, some of us are dealing with terminal illnesses, abuse, hunger and so many other adversities. We all have this well of strength that becomes uncovered when we reach a point where we think there is no possible way we can carry on. Some say it's the strength of god, some have no idea where it comes from and there are some of us who do give up. It's all okay. I think it's okay to get down and feel like the weight of the world is upon you. I think it's okay to feel miserable and overwhelmed by struggle. That's what it means to be a human. The beauty is allowing yourself the time to have a massive pity party, get that shit out of your system and then get back on that horse and ride. I have gone so deep into myself, shutting out everyone and everything in order to sort things out for myself. Everyone has their own way of dealing with things. We are all struggling and as long as we have humility, openness and compassion this world will feel a hell of a lot less lonely. Nobody is truly alone in their struggle, no matter how isolated we can feel. Struggle can be used as a tool for growth. It can bring us back from being caught up in money, power, keeping up with jones'. It can remind us what is truly important in life and give us a deep sense of gratitude for when things are good and hope for when they aren't. I can appreciate the struggle now for what it offers. I assumed the laparoscopy surgery would be a breeze. I figured in three days I would be fine, nearly two weeks later I am still not fully myself. I told my mom one day that I didn't understand how I could be in so much pain. "When you think about it, there were people inside of your abdomen doing the Watusi!" http://www.conquerchiari.org/index.html http://www.columbianeurosurgery.org/conditions/cervical-myelopathy/ http://www.endo-resolved.com/
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It's early in the morning way before the sun has come up. I am laying on the hospital bed before going into surgery. I am surprisingly unfazed by the idea that I am about to have people cutting my head open and getting really close and personal with my brain. I am trying to be brave so my family is more at ease. I am thinking that there is a chance I might not live through this. It is brain surgery, after all.
They are going take out a small area from the back portion of my skull and the inside of the top two vertebrae to give my brain a little more room. Things are cramped in there. They bring me into the prep room and inject me with some drugs to forget. The next thing I know my family is surrounding me. My mom is trying to be positive. My boyfriend at the time is sobbing. I am not sure what's going on. They've got me floating off of a high dosage of morphine. All I remember is everyone having this look of fear on their faces that they were trying their best to conceal. I looked pretty rough. I looked like I got the shit beat out of me. I did. When they did the surgery I was face down. The breathing tube was rubbing against my lip and created a massive blister. I could have won some kind of title in the guinness book of world records for this blister. I looked like I had a shoddy lip injection. I didn't know it at the time but the surgery had taken far longer than they expected and I had a bit of trouble coming back around. It was now night. I laid there, fucked up from all of the pain medication. I was hungry. The nurse gave me a popsicle and some ginger soda. A sour popsicle mixed with ginger soda causes me to vomit. It's a bad combination when you are not on drugs. It's even worse when you're on so many drugs you are already feeling queazy. At least I'm alive. image SourceI have been suffering from severe body pain, headaches and other strange symptoms for over 5 years. I went to doctor after doctor and was told that my problems were perhaps all inside of my head. Maybe I was a hypochondriac, maybe I wanted attention, maybe it was all due to depression. They were right about being depressed. I knew something was wrong with me and it's pretty depressing when nobody believes you. I was feeling pretty hopeless about the situation and I was beginning to doubt myself. I felt like maybe I was a hypochondriac, maybe it was all really inside of my head.
I went to get a physical and I told the doctor about the severe pain I would have in my body. Sometimes it felt like my ribs were being crushed and every breath felt like I was being stabbed. I told her that I would have sudden pain in the back of my head that would bring me to my knees. It felt as if someone had hit me with a sledge hammer as hard as they could. She ordered an MRI. A few weeks later they called and explained that it was indeed all in my head but not in the way everyone had been saying. I was 16 years old. That's when I was diagnosed with Arnold Chiari Malformation. Arnold Chiari (key-are-ee) Malformation is a fairly rare incurable neurological condition (some say it's a disease) which causes a myriad of neurological issues. Basically, Chiari is kind of a bitch. My cerebellum isn't where it should be, it's hanging out with my brain stem and spinal cord causing me a lot of trouble. I've got a big brain. It's too big to be kept confined. It's revolting against it's skull prison. People with Chiari will tell you that it sucks. It does. It's not a fun thing to deal with every single day of your life. I try to keep my complaining to a very bare minimum because nobody likes a debbie downer. I have learned over the years that the more I talk about what's happening to me, the more I complain about the pain, the more energy I put into it and the worse things get. So most people have no idea that I am suffering on a daily basis. I like to keep it that way. I don't want anyone feeling sorry for me. |
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Usage of tasteful profanity which you might not consider tasteful. Some stories are vulgar. Colorful language and descriptions included. Reading these stories may cause you to become offended, appalled and uneasy. You have been warned. Read with caution. Categories
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