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Bravery is often Invisible

Posted on February 10 2014

Bravery is often Invisible
"People are often unreasonable and self-centered. Forgive them anyway. If you are kind, people may accuse you of ulterior motives. Be kind anyway. If you are honest, people may cheat you. Be honest anyway. If you find happiness, people may be jealous. Be happy anyway. The good you do today may be forgotten tomorrow. Do good anyway. Give the world the best you have and it may never be enough. Give your best anyway. For you see, in the end, it is between you and God. It was never between you and them anyway." -- Mother Teresa

​       My name is Kelsey, and this is my story. I hope it helps at least one person somewhere remember to never give up, be brave. I have been contemplating sharing this for a while now and finally I am twenty-three years old and I do not remember a time where I didn’t suffer from chronic pain. However, I keep it all within myself. Bravery is often invisible I believe. As a child it began with stomach pains and allergies. I had to get allergy shots in both of my arms for many years once a week. When I was fourteen years old I remember having this weird pain in my shoulder when I was playing basketball with my cousin. A week later I could not move my arm hardly at all. I went to my town’s local clinic and they told me it was Tendinitis. They started giving me corticosteroid shots and put my arm in a sling. Another week went by and it did not get better. I went to an orthopedic doctor and they took xrays. When the doctor came in he told me that I had scoliosis. My shoulder hurt because my spine was curving into my left shoulder blade. Then he said, “It might have been developed related to your spina bifida.” I gave him this blank stare and asked “my what?” He said, “you never knew you were born with it?” I was so confused. I went fourteen years never knowing I had it. I remember always wondering why my lower back would just ache. I also have a small dimple with a light patch of hair, which now I know is one of the first signs. I also have a twisted vertebrae in my upper back, and my spine splits somewhat in the middle of my back. So I have a slight lump in my middle back. I began physical therapy after school the next week a couple times a week. It became a normal routine. Well insurance only covers it a certain amount of times so my parents had me stop going. My doctor told me that it was something I would need to do the rest of my life. I went back routinely for checkups with him until he retired a year later. I remember going to my childhood doctor complaining often of pain and difficulty focusing in school. Over the next few years my pain only worsened. I developed tension migraines and TMJ. I started going to Lincoln to a TMJ specialist to be fitted for a mouth piece to realign and correct the TMJ in my jaw. They believed that it was caused from grinding my teeth at night unconsciously because of pain. I began treatment for that and of course as my jaw was corrected my teeth did the opposite! I went from having perfectly straight teeth with no cavities to a mouth full of slightly crooked teeth. When I was 18 I did the Invisalign braces to correct my teeth. I went to a specialist for my migraines after passing out at school. It took awhile to find the right medication to help with my migraines. Everything I tried made me extremely drowsy. When I was 17, I moved from my small town to Omaha for college. My pain continued to worsen and it was so hard to focus in school. I finally told my doctor that I was tired of not being able to focus. Finally, at the age of 19 they decided to help treat my ADD with medication and since then I have been able to focus so much more! God is good:). However, after being unsuccessful in the nursing program at College of Saint Mary I searched for other schools. It was so hard to convince a college to except me. I was so frustrated with myself and my inability to focus prior to medication that it affected my grades. I went to a specialist at the Omaha spine center just to have them tell me that my knees “were bad!” I thought to myself, “wow and I thought the popping and cracking were a good thing!” [sarcasm]. So I left another specialist’s office without any new news and more disappointment. In 2012, at the age of 22, I had knee surgery on my left knee. This did not help with my pain whatsoever, unfortunately. My doctor recommended me to a rheumatologist in Omaha. Finally, after years of dealing with this horrible worsening pain all over my body, my rheumatologist diagnosed me with Fibromyalgia in 2013. He believes it was caused from having chronic pain for so long that my body just doesn’t know how to react to it pain impulses anymore. Since then my pain has worsened greatly. Before I had Fibromyalgia, my pain level was around a constant 3 out of 10 on a good day. Now, it is a constant 5 or 6 on a good day. Fibromyalgia is an often a misunderstood disease. Many people do not believe it is a real disease, but it is slowly becoming recognized. When people question me about it I just explain it this way: Our brain reminds us when our body comes in contact with something painful. (Example: you touch a hot stove and you immediately know it is hot. If you keep touching the stove, it is going to become more painful.) Now in regards to myself, I was reminded on a daily basis that I had back and knee pain. Since it occurred for most of life in some way or another and could not be managed, my body now doesn’t know how to react to pain. I feel constant pain impulses anywhere throughout my body. Hopefully that is a good explanation and understandable! Fibromyalgia is a horrible disease. People see you on the outside and you look healthy. I am always laughing. Laughter is how I cope. I also always have a rosary with me. It is one of the most beautiful possessions I believe I have and always makes me feel safe. Since being diagnosed with Fibromyalgia, I have developed insomnia and raynauds from it. My pain sometimes prevents me from falling asleep for days. Other times it wakes me up in the middle of the night. I sleep on average 4-5 hours of sleep with the help of a prescription sleep aid. It took several medications to finally find something that will help me fall asleep. Some days I wake up with horrible pain in my neck. It makes it difficult to hold my head up on days my pain is high. It has caused difficulty when I am driving. I cannot turn my head very far when I am changing lanes; I have to turn my whole body. Do not fear the roads though, I am extremely cautious when doing that! My fiance removed all the head-rests from the seats and that helped greatly. Fibromyalgia has changed the texture of my hair. I used to have very thick, soft hair. Now my hair is very brittle and breaks very easily. I have to use alot of product to make it feel soft at all! Besides increased pain, the worst thing Fibromyalgia has caused me would probably be in worsening my preexisting Raynaud’s phenomenon. It is an autoimmune condition related to circulation. The disease causes an interruption of blood flow to the fingers, toes, nose, and/or ears when a spasm occurs in the blood vessels of these areas. Spasms are caused by exposure to cold or emotional stress. Typically, the affected area turns white, then blue, then bright red over the course of the attack. There may be associated tingling, swelling, or painful throbbing. The attacks may last from minutes to hours. It bothers me on a daily basis. I have always had difficulty with circulation in my legs and hands. I rarely wear shorts because I am self-conscious about how purple my legs get. My feet are always ice cold to the point where they are slightly numb. My hands are always an embarrassing factor also because they turn really purple as well. I have to be very cautious when I shower or wash my hands because I can get the water a lot hotter than it feels to me. I can only tolerate my hands in a freezer for a few seconds. Anytime I have my hands in the freezer for long they get extremely cold and ache. During the winter months, I have trouble opening doors. The doorknob gets so cold in the winter and it is painful to touch. So turning a doorknob can be difficult. I always wear gloves in the winter if I have to touch my steering wheel. My fiance luckily organizes my freezer, and puts the stuff I use the most on top so I do not have to search for anything very long. My ears, cheeks, and nose get extremely red and painful when I have been outside so that is also another factor I get self-conscious about sometimes as well. I save money on blush though so that is a win! :) After almost a year of finishing my general education courses at a community college, I finally was accepted into the nursing program at Midland University. I have met some of the best people that I consider mentors here. They are the first ones who have allowed me to not be okay for once. I was allowed to say “I am not okay, I am hurting, and I need you.” I was more than thrilled and blessed for the second chance. My first semester went smoothly. I never was able to pay more attention in school until that time. The second semester was a huge disappointment. I guess at this point in my story I should mention a little more about my personal life. My family life has been a rollercoaster of disappointments. I am the youngest of five children. The only child born to both of my parents. My mother was married once before and to this union brought 2 boys. My father was also married once before and to this union brought 2 girls. My two sisters have always been a struggle to deal with for both my parents. They are very ungrateful and spend most of their days talking about the other one. I don’t really even know if they like me at all. They thought that I was a mistake and that my father only had me to be spiteful to them. I have tried many times in my adult life to try and build a relationship with my oldest sister, but it always ends up with her wanting to fill my head full of stuff about our father that I don’t even think is true. I don’t know how many times I fell for her acting like she wanted to get to know me. When I was only 6, they told my grandma something about my father, and it ended with her telling both him and to “go to hell.” I was only 6 and I already thought that nobody really wanted me around. When I started working as a CNA at 16, I worked at the nursing home in my home town. My grandma lived there after she was diagnosed with Dementia. I used to take care of her and just pretend that I enjoyed being around her. This became even more of a reality last September when my grandma died a few days after my birthday. I had a test that Wednesday and did not know my grandma had been put on hospice care. The morning of my test I logged onto my facebook account like I usually do to check my daily “message from God,” that is where I saw my aunt status about my grandma and how she was in the dying process. Of course I have the whole tough guy “I’m fine” attitude, so I didn’t tell anyone and took my test anyway. Bad idea. At her funeral I was asked to sing. Even though my respect for her was minimal at this point, I decided any good and respectful granddaughter would fulfil this duty. Right before I got up to sing, my sister was asked to speak on behalf of all the grandkids. She proceeded to talk about this amazing and flawless woman who lived for her grandchildren. I am not doubting she wasn’t these things, but I just never met that person. I was the mistake child. I sat there and listened to my sister mention every grandchild and even family friends, but never me. I don’t know why I was surprised. It took all of me to not just sing and immediately walk out, but I truly believe God put his hand on my shoulder and reminded me to forgive. I waited until everyone left the cemetery before I stood up by the casket and said my final goodbyes. The sad reality hit me that we never had a relationship and now we won’t. I remember telling her that “I’m sorry I was never good enough to get to know you, but maybe someday in Heaven we will have the chance." Then I left. I did not shed a tear at all that day even though on the inside my heart was shattered yet again. You never really get used to being disappointed over and over again. After the funeral I couldn’t believe it when I heard my father say that he thought my sister did an excellent job speaking and the funeral went well. Evidently we were at two different funerals. My grandpa died before I could really remember much about him. Alcoholism consumed alot of people on my mom’s side. My grandpa was a mean alcoholic. He died of lung cancer when I was 9. I sang at his funeral too. The only memories I have of him are getting smacked by the buckle on his wallet for being in the way, or just having a natural fear to even breathe around him. Alcohol is huge to my grandma too. I knew what beer and winsor sours tasted like by the time I was probably 8. My uncles thought it was cool that I liked the taste of beer. My grandma’s sister is very unpleasant. She spends most of her time talking about what is wrong with other people. One of her daughter’s, who is not aloud around the family anymore, had a son born with mental retardation. My family says that she does not deserve to be around because she wanted to put her son in a special home. Also, since she had been with several men, she was a disgrace. Of course they use worse language to refer to that than I want to mention here. When I was 7, I was playing with one of my toys in the corner of a room on christmas. I was told I was in the way and to go play in the other room where he also was. I remember him telling me he wanted to show me the record player they had and how to use it. Long story short, he pulled my pant’s down and I remember him describing the underwear I had on. Luckily, praise God, my mom walked in the room. Still to this day he follows me around and makes sexual comments. Nobody does a thing, even my own mother. Parents are suppose to protect a child and I feel like mine never did. They are good people and I know love me, but I still can’t help but feel betrayed. My mother’s sister has had one of the biggest impacts on me. She refused to come to the hospital or take pictures when I was born. I remember as a child listening to her constantly whisper things about me. When I was 10 I finally asked her why she wouldn’t leave me alone. I just remember us getting in a huge fight and when she left I was left crying alone while my grandma consoled her. She enjoys taking pictures but would always group the grandkids and other relatives together, but told me to get out of the picture. Or she would just angle it and cut me out. I used to cry about it all the time. Still nobody ever did anything to stop it. The one time I stood up to her she followed me to my car screaming and punched my window when I drove by. My second brother was excommunicated from the family when he was a teenager almost 20 years ago. He stole money from my family and a bottle of alcohol so he has never been allowed to come to holidays or gatherings since then. My identical twin uncles are tolerable but raised me to be tough like a male. I grew up getting punched, tackled, etc like “men.” I was raised to not trust anyone. I was raised to be perfect. Stupidity is not an option. Compliance to their opinions is a must. Crying is weakness. I still cannot cry in front of people unless it is to the point where I cannot control it. I was targeted a lot for being female. They would jokingly refer to me as a “wench” and that all women are the same, and so was I. I was raised Methodist technically, but I was the only one that wanted to go to church. After I left for college, I felt like I belonged in the Catholic church and was confirmed there. This caused a HUGE uproar still 3 years later. I don’t know how many times I was told how stupid I was. My faith is the one thing they have never controlled. My faith and my laughter are probably the two things people notice. Those are the two things I have never let them have. However, my self- image is theirs. My most embarrassing and hateful thing about myself is that I suffer from Trichotillomania. Basically, it is self-harm. However, people who have it normally do it in a way that is the least obvious. I am so hard on myself for any flaw I possess. The bad part is that most of the time I do it when I am studying and do not realize it. Again, I hate it and it is embarrassing to be categorized as a self-harm person but I am getting better everyday and that is something to be proud of. My mom always expressed her love toward me. I don’t want anyone to think my parents are awful people. They are just self-centered and emotionally damaged themselves I am sure.I have never heard anything about being pretty or smart. My weight has always been something I dwell on. I have always been very petite and under the normal weight for my height. However, anytime anyone gains any weight, you are called out on it. Ironically, none of them except my mother is very small. I have been questioned on every emotion I have ever expressed that now I never know how to express them. Anytime I decide to I question it after. I question whether I am wrong or not. Bravery is often invisible. I lived to be 23 and never told any of this to anyone because it was “no one else’s business.” Very few people even know that I deal with chronic pain on a daily basis. I deal with the burdens of it every single day. There is never a day where I truly feel 100%. Somedays I can barely sit up, and have to barrell roll out of bed. [Which is probably a funny sight, especially when my dog is in the way!] My family is not actively involved in anything to do with my disease process. I go to doctors appointments alone. I pay for the appointments and all of my medications. Most days I am okay with pretending to always be fine. However, sometimes I do wish someone would just say to me that it is okay to not be fine for a few minutes. I am grateful for my fiance Chase. We have been dating for almost 4 years and are recently engaged. We haven’t set a date yet, but eventually in the next few months we will. He has been a great sport in all of this. I am sure I am not by any means easy to deal with. Most people would have walked away. I also have a corgi named Archer, whom I love to pieces. I think the main reason I love them both is their loyalty. I have never felt that before. My parents do not have a good marriage. They fight all the time. My dad has a gambling problem that has affected me financially. I have always been the role of counselor in my family. It is difficult to do when I have so much pain to bear myself internally. It has been a struggle in my relationship because I lack trust. I also do not know how to be vulnerable to someone else. Luckily, I found someone patient and trustworthy. That is why I want to be a nurse. It is what I have always wanted to be. They are the first people I saw express kindness to a stranger. A nurse reminds patients that you are never alone. I want to be their for people and remind them that they do not have to fight any battle alone like I did. If I can help one person then I feel I have made a difference. I am trying to fill my heart with Joy everyday despite my battle everyday. My idea of joy is (Jesus-Others-Yourself). I just am trying to figure out how to fulfil the Y part currently. It helps me feel I have a purpose and belong here, even on days when I feel I do not. That is the main reason I am sharing my story. Everyone deserves to not be alone. Everyone should believe that they can keep going. Always be brave and God bless. LIVING WITH AN "INVISIBLE ILLNESS" by Mary Hastings written May 2003 While from the outside I may seem normal, It’s the part that you can’t see, The constant pain and struggles within, Are ever so apparent to me. Although I may wear a smile, Often times it's covering the tears, Yet not tears because of sadness, As it often may appear. Don’t be too quick to judge though, Because there is so much more than is known, What may seem to look like one thing, Just might turn to prove so wrong. I may sometimes seem unfriendly, Or too centered around self, Because sometimes standing takes all I’ve got, And there is just no energy left. Sometimes my words may sound awkward, My communication may not always convey, My true inner thoughts and feelings, Aren’t always expressed by what I say. You may think that I’m not really listening, Sometimes my face or speech may not show, But I do hear every word you say, I really want you to know. The information doesn’t always process, As quickly and as clear, And sometimes it takes me longer, To interpret what I hear. I possibly miss many opportunities, To offer needed love or support Because sometimes it just takes to long, For my thoughts and words to sort. So if my actions seem inappropriate, In the things I say or do, I hope that you can understand, That it is not because of you. There are times I get discouraged, When forced to accept my inability-- It’s hard to admit my limitations, And it leaves me feeling so guilty. Yet every moment is a reminder As I look all around, The effort it takes just to get through the day, Just picking my feet up off the ground. I am not looking to find pity, I am just attempting to explain, That the person that you may often see, And the real me aren’t exactly the same. You may not see the peace and joy, When you look upon my face, But I know that each day I live, Is because of God’s amazing grace. It is hard to always be cheerful, When the pain is so very real, And not everyone can comprehend, The extend of how I feel. I don’t see it as all bad though, Although I’d much rather it not be so, But I know that if I must endure, God will strengthen me as I go. It may seem as if I take no pride In the way that I look or dress, However, there might be much more going on, Inside of the big mess. My home may not be nice and neat, My bed not always made, The laundry may not all be done, And often it makes me ashamed. But I must only do what I am able, Each day I have to choose, What is most important right then, And the tasks I am able to lose. All the plans and dreams I once held, Now don’t seem quite so clear, Yet I feel a peace within, As my Lord keeps drawing me near. To have a chronic illness, Or a disability that one must bear, Somehow puts life into perspective, And helps to make us more aware. I realize now that each day I live, Is a gift from God above, It is hard not to lean on Him, Or to look to His great love. I now can fully understand, On my own, there is nothing I can do, It is only be faith and prayer, That I can make it through. It may seem an exaggeration, No one can always feel so bad, But only those who have walked in these shoes, Can appreciate the battles that I have had. I see so many people less fortunate than me, Don’t have to look very far, There are so many suffering all around, It doesn’t matter who you are. Circumstances and illnesses can hit unexpectedly, And you can never really be prepared, It may be difficult to understand, Leaving you vulnerable and feeling scared. I must constantly guard my thoughts and mind, As Satan always tries to bring me down, He wants me to feel hopeless and unworthy, And turn my smile into a frown. It is hard not to get depressed, When I see the burden my family must bare, The fact I cannot always meet their needs, No one could be more aware. There are times I feel like giving up, When I look too far ahead, But I know if my loved ones were given the choice, They would just choose to have me here instead. There are so many ups and downs, New challenges each day, I must strive to keep my eyes on God, So that I be not led astray. It would be so difficult to cope, Without God, my hope would all be gone, Because through submitting to Him in prayer, Is when my weaknesses are made strong. So when you see the way I look, When my insecurities are in view, Base who I am on what’s inside, Not by the things that I can do. The greatest lesson that I have ever learned, Is the reason that I am here on earth, Is not to live for self and gain, For in these things are not my worth. God has a purpose for my life, Although the details I may not see, He still has it under control, And is continually watching over me. Maybe one day I will be well, And my health He will restore, But if that is not in God’s will, I will still praise Him ever more. If this suffering can bring honor to Him, I will gladly accept the call, Because of His great love for me, He suffered and gave His all. I have to believe that what I am going through now, Will somehow work together for good, And one day it will be revealed, And all things will be understood. While I still worry about what you think, More the example that I may show, I am learning so much more each day, and this has really helped me to grow.

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