tag:blogger.com,1999:blog-41972034659455533342024-03-13T16:03:57.841-04:00It's Not as Easy as You ThinkI am your not so average 22 year old battling Mitochondrial Disease, Gastroparesis, POTS, Epilepsy, MCAS, brain injury, and several other chronic illnesses. These are my thoughts on what it's like to be a young adult fighting several life-limiting diseases.Michaela Shelleyhttp://www.blogger.com/profile/08846303698202380222noreply@blogger.comBlogger106125tag:blogger.com,1999:blog-4197203465945553334.post-31929992524244784972020-11-24T21:00:00.000-05:002020-11-24T21:00:53.263-05:00Epilepsy is a Thunderstorm Inside My Brain<p><span style="font-family: "Helvetica Neue"; font-size: 12px;">Before my epilepsy diagnosis, I loved thunderstorms but now they have me terrified. Lightning was beautiful. Thunder was calming. Wind was refreshing. Rain was peaceful. Until it wasn’t… Now I can never escape thunderstorms because one called epilepsy decided to stick around inside my brain.</span></p><p class="p1" style="font-family: "Helvetica Neue"; font-size: 12px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;">Every misfiring neuron feels like lightning striking my brain. It is feeling a seizing coming but being unable to prevent it so I must wait for the inevitable- blacking out.</p><p class="p1" style="font-family: "Helvetica Neue"; font-size: 12px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;">Every rumble of thunder is the slightest bit of overstimulation that sends me into a seizure. It is the overwhelming pain that comes along before, during, and after every episode.</p><p class="p1" style="font-family: "Helvetica Neue"; font-size: 12px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;">Every gust of wind sweeps up my thoughts leaving behind memory loss and confusion. It is returning to consciousness following a seizure unsure of where I am or who the people around me are.</p><p class="p1" style="font-family: "Helvetica Neue"; font-size: 12px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;">Every raindrop like a seizure drowns out the rest of the world surrendering me helpless with no cover to run towards. It is losing control of my body leaving me frozen unable to speak but still fully aware of my surroundings.</p><p class="p2" style="font-family: "Helvetica Neue"; font-size: 12px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><br /></p><p class="p1" style="font-family: "Helvetica Neue"; font-size: 12px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;">Those aren’t even the scariest parts of the storm. No, the scariest part of the storm is the fact that I am thirteen months post-diagnosis and today is no less difficult than day one. I have no more control today than I did thirteen months ago. And tried to control this I have- mostly I have fought to control what parts of this storm others see. Before epilepsy, I had good control over my health conditions and rarely ever needed help in managing them, so the only people who witnessed the personal details of my fight was my family. I quickly realized epilepsy does not give me an option of protecting my support system from the fears I was experiencing because a storm can and will happen at any time or place and often for no reason at all.</p><p class="p1" style="font-family: "Helvetica Neue"; font-size: 12px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><br /></p><p class="p1" style="font-family: "Helvetica Neue"; font-size: 12px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;">There is a moment from about a month and a half following my diagnosis that consistently plays in my head. Usually, I don’t remember my most horrible moments but this day I remembered everything which caused me to hit a breaking point because I finally recognized the harrowing damage this storm burdens others with. On this day, while I was being driven home from school by a friend I had a seizure in that friend’s car. This was not the first time she watched me have a seizure, but on this day the lasting effects of the seizure were some of the worst I had experienced. As we parked at my home I remember returning to consciousness in a great deal of pain, so I stayed in the car while my friend went inside to grab my mom. When my mom came out I tried to get out of the car but at that point, the pain was so bad I could barely walk. My friend witnessed my mom practically carry me inside while I cried out in pain with every step. This friend looked like she was about to cry as she was forced to watch me endure the worst of this storm. One I couldn’t protect her from. I felt so guilty for placing that burden on her.<span class="Apple-converted-space"> </span>She called me brave that day but I hope she knows how brave I thought she was. She didn’t tell me, but like myself, I know she was feeling helpless and scared. Very few people are prepared for a thunderstorm like this and even though she was ill-prepared she never ran at the sounds of thunder and that is bravery.</p><p class="p2" style="font-family: "Helvetica Neue"; font-size: 12px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 14px;"><br /></p><p class="p1" style="font-family: "Helvetica Neue"; font-size: 12px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;">Maybe one day I will find thunderstorms beautiful again but right now I want nothing more than for this thunderstorm to end so that neither of us has to feel scared again.</p><p class="p1" style="font-family: "Helvetica Neue"; font-size: 12px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><br /></p><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-HZb5_2Mavfw/X726Z_G1cGI/AAAAAAAAhdE/wo99jijNXAYhksUsAm79pAFgctZiuVJmgCLcBGAsYHQ/s1760/CD8F61EB-CE1E-401E-8338-C3112B5E3726.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1760" data-original-width="1040" height="320" src="https://1.bp.blogspot.com/-HZb5_2Mavfw/X726Z_G1cGI/AAAAAAAAhdE/wo99jijNXAYhksUsAm79pAFgctZiuVJmgCLcBGAsYHQ/s320/CD8F61EB-CE1E-401E-8338-C3112B5E3726.jpeg" /></a></div><p></p>Michaela Shelleyhttp://www.blogger.com/profile/08846303698202380222noreply@blogger.com1tag:blogger.com,1999:blog-4197203465945553334.post-81568873200883928092020-09-17T18:30:00.007-04:002020-09-25T16:13:42.875-04:00An Open Letter To Myself on My Diagnosis Day<span id="docs-internal-guid-f0b0d4c4-7fff-63fd-350d-c9f12a7a297b"><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: "Times New Roman"; font-size: 12pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Hey Michaela,</span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: "Times New Roman"; font-size: 12pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><br /></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: "Times New Roman"; font-size: 12pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Today is the big day. It is not your big day as in graduation or a wedding, nonetheless, it is still a big day that will change your life forever. Today is diagnosis day. The day you were given a diagnosis of Mitochondrial disease. Unfortunately, you have known about this possibility for months. Today is meant only to be a formality. I am sorry, you deserve more than this.</span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: "Times New Roman"; font-size: 12pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><br /></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: "Times New Roman"; font-size: 12pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Your brain will try to protect you by convincing yourself they are wrong. You’ll beg for them to be wrong, but we both know that is an unrealistic scenario. You’ll try to cope by putting in your headphones and turning up the music in order to drown out the bad. You will do what you need to in order to survive. Here is the problem, you cannot live in survival mode for the rest of your life. Although that will not stop you from trying. You will continue to shut people out. I know you are trying to protect others and yourself, but it is not healthy. Knowing what I know now this is how I wish you would react: I pray you let yourself feel what you need to feel. I pray you let others hold you. I pray you decide to save yourself for once. You put yourself through more hell than necessary if you decide not to do these things. I am so sorry you will decide otherwise.</span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"></p><p style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-NQXw9c4ExnQ/X2OcS_Li7YI/AAAAAAAAfw0/qlYbvn6sdDAf5_MadJ85ExiDUzt98DNPACLcBGAsYHQ/s2048/D79F8AF5-93CC-4878-A745-32646854B630.jpeg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="320" src="https://1.bp.blogspot.com/-NQXw9c4ExnQ/X2OcS_Li7YI/AAAAAAAAfw0/qlYbvn6sdDAf5_MadJ85ExiDUzt98DNPACLcBGAsYHQ/s320/D79F8AF5-93CC-4878-A745-32646854B630.jpeg" /><br /></a>At my diagnosis appointment, my mom took a photo of me in the waiting room without my knowledge. I saw the photo for the first time several months ago while looking through photo albums on the computer. This photo is what prompted me to write this post during awareness week.<br /><span><span style="font-family: "Times New Roman"; font-size: 12pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><br /></span></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Times New Roman;"><span style="white-space: pre-wrap;">In writing this I have a responsibility to prepare you for the hurt you will face. </span></span><span style="font-family: "Times New Roman"; font-size: 16px; white-space: pre-wrap;">You’ll feel defeated. Many days you will forget the good. You’ll promise others you are okay but secretly you cry alone in your room. You will scream in pain. You will be robbed of your teenage years. You will lose your independence. You will lose the person you thought you are. You will face your own mortality. I am sorry for all you must endure.</span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: "Times New Roman"; font-size: 16px; white-space: pre-wrap;"><br /></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: "Times New Roman"; font-size: 12pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">I also feel the responsibility to remind you there will be good within this diagnosis. You will find happiness. You will make it farther than expected. You will find someone who loves you despite your diagnosis. You will experience what you thought was impossible. You will help others heal through the words you share.</span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><br /></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">Lastly, I would like to recognize: You are not damaged goods. <span style="font-family: "Times New Roman"; font-size: 12pt; white-space: pre-wrap;">You are brave. You are resilient. You are loved. <b>And you are my hero. I am so proud of you!</b></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: "Times New Roman"; font-size: 12pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><br /></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Times New Roman;"><span style="white-space: pre-wrap;">-M</span></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Times New Roman;"><span style="white-space: pre-wrap;"><br /></span></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Times New Roman;"><span style="white-space: pre-wrap;">September 15th-19th, 2020 is Mitochondrial Disease Awareness Week.</span></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: "Times New Roman"; font-size: 12pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">To learn more about Mitochondrial disease: </span><span style="font-family: Times New Roman;"><span style="white-space: pre-wrap;">https://www.umdf.org/what-is-mitochondrial-disease/</span></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: Times New Roman;"><span style="white-space: pre-wrap;">An awareness post of mine that helps explain the diagnosis: https://chronicallyawesome23.blogspot.com/2015/09/mitochondrial-disease-awareness-week.html</span></span></p></span><span><p></p><div><span style="font-family: "Times New Roman"; font-size: 12pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><br /></span></div></span>Michaela Shelleyhttp://www.blogger.com/profile/08846303698202380222noreply@blogger.com1tag:blogger.com,1999:blog-4197203465945553334.post-27608588713924129882020-08-13T20:20:00.017-04:002020-08-13T20:36:33.356-04:00Hamilton and Grief<p class="p1" style="font-family: "helvetica neue"; font-size: 14px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;">*In case you are unaware of the musical Hamilton, it tells the powerful story of founding father Alexander Hamilton as he rises from an orphan living in poverty to a man who gains great political power during the American Revolution. I highly recommend watching the musical on Disney +, seeing the show on Broadway when it reopens, or at the very least listen to the soundtrack.*</p><p class="p2" style="font-family: "helvetica neue"; font-size: 14px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; min-height: 16px;"><br /></p><p class="p1" style="font-family: "helvetica neue"; font-size: 14px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span class="Apple-tab-span" style="white-space: pre;"> </span>Since the release of Hamilton on Disney + last month, I have spent an obscene amount of hours belting out the lyrics to my favorite songs word for word while watching the play. Some might say it is a slight obsession. To me, it is a welcomed pleasure to no longer listen to the soundtrack alone. While repetitively watching the play I noticed an emphasis on the death and grief that surrounded Hamilton. The plot includes a heavy conversation on the hardship and grief Hamilton had to overcome in his early life as he suffered a great number of losses from those who were close to him. These losses forced Hamilton to question his own mortality thus changing his perspective of the world. This portrayal of grief was shown in a way I could closely relate to as I too have experienced a number of losses in my early life due to my chronic health conditions.<span class="Apple-converted-space"> </span></p><p class="p1" style="font-family: "helvetica neue"; font-size: 14px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span class="Apple-tab-span" style="white-space: pre;"> </span>Unfortunately, my grief as a young person with a chronic illness is enormous. I grieve for the life I wanted to live and the life I thought I would be living. I grieve for all the things I miss out on due to my illness. I grieve for the anticipation of my own mortality. And I grieve for the friends who have died as a result of diagnoses similar to my own. Since my health deteriorated in 2012, I was introduced to a community of adolescents and young adults with serious health issues. This group of people quickly became more than friends and now I consider so many of them to be my family. I have witnessed more than 60 young adults die as a result of their illness. They were my family. I have watched my family die. It never gets easier. My heart shatters upon hearing the news of each loss. In the months since the pandemic began (mid-March 2020) seven of my friends have died due to their illnesses. Seven. The oldest was 30 years old, while the youngest was just 17. Their names so easily fall off my tongue— Jill, Ansley O, Ansley M, Carly, Nicole, Tasha, and Charley. Jill always lifted others up. Ansley O had a bubbly personality. Ansley M loved giraffes. Carly was the oldest of six and was the best big sister. Nicole always brightened up any room she walked into. Tasha cared for others amidst her own suffering. Charley aspired to do big things. Their deaths have sucked the air out of my lungs. They were so young, so important, and deeply loved not only by their families but also by our chronic illness community. I will always grieve these sixty-plus losses so heavily.</p><p class="p1" style="font-family: "helvetica neue"; font-size: 14px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span class="Apple-tab-span" style="white-space: pre;"> </span> At a young age, Hamilton watched as everyone he was close to died all while Hamilton survived the worst. For him, it is almost as though death became a commonplace. Death surrounded Hamilton so much that it became his truth. A truth he had witnessed often. Death went from being an acquaintance to an unwanted house guest that would never leave. It was no longer a question of whether or not he would die young but rather a statement. It appears that Hamilton saw so many people die at a young age he felt it to be a kind of normal because of this he expected he would die at a young age like everyone else in his life. Death was always there and death was always looming despite it having been uninvited. Death has become an uninvited primary fixture in my life too. My illness has meant death is a frequent topic of conversation. It is not a question of whether or not my disease will take my life but when my disease will take my life. I watched as people who I considered to be part of my family die as a result of their conditions— many who had the same health condition(s) as myself. Like Hamilton, I never thought I’d live past twenty because most with my diagnosis won’t make it to their teenage years. The fact that Hamilton and I are alive is a miracle. Both of us question when our time will come because for so many years we have anticipated our deaths while watching those we love die. I not only anticipate my death but I also anticipate the possibility of my friends dying.</p><p class="p1" style="font-family: "helvetica neue"; font-size: 14px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span class="Apple-tab-span" style="white-space: pre;"> </span>I no longer try to pretend death is not around. It is not a taboo topic of conversation. We must learn how to incorporate it into our lives in a healthy manner. I have developed a cycle of emotions I undergo when my friends die. This cycle is how I have learned to incorporate my grief into my life. It is one of the few ways I have been able to explain to myself why I feel the way I feel and how I cope with loss. First comes the devastating news. I am shaken. I begin to talk amongst friends within our community. If I did not closely know the person then I speak with those who did. I want them to get the news firsthand if they had not already received it and I wanted to know what that person was like from the perspective of others. We exchange a couple memories. Next, I briefly collect myself in order to share the news on social media about our loss. I want to honor the beautiful person who died. I try my best to support the community by promising if someone needs to talk then I am here. A handful of those in the community reach out wanting to talk, so I listen. I want them to feel heard. I want them to voice their feelings as they come to terms with the death of another young person within our community. I push aside my feelings because at that point in time they do not matter.<span class="Apple-converted-space"> </span>My sole purpose is to help others cope. Once things have quieted down I let myself feel what I feel. I find myself upset as the hurt hits me hard. I wonder why they had to die. I question why I made it to 22 when they never had the chance. I question my future. And then I pull myself out of that state of anger and devastation. I know I can’t feel that way forever. I have a community that looks up to me and needs me just as much as I look up to and need them. While this does not work every time I find it has given me the ability to take control as my emotions flow from one side of the spectrum to the next. I remember while I was boarding a plane home from New Zealand my Mom told me one of my friends who I was super close to died. I cried. I felt so helpless and alone. I couldn’t help others and I was unable to reach that community of support I so desperately craved. I couldn’t share her death with our community until almost a day later. I couldn’t help anyone. Instead, I was stuck on a plane with my own emotions. I was broken. Today I know that friend is gone but I still don’t fully grasp the idea that she is gone. It was a sudden and traumatic death that still clings to me today. It was not a healthy way to grieve and it is still a loss I am trying to come to terms with that loss in order to find a healthy way to grieve that friend.</p><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-rOJlkb9GgP8/XzXZbKe7bII/AAAAAAAAepM/UKQUGLl0CC06pS5xab1seELmdvf4-tH_wCLcBGAsYHQ/s2048/3C771FCD-64D4-491A-B8D7-F6AF60F41AB2_1_201_a.jpeg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="2048" height="400" src="https://1.bp.blogspot.com/-rOJlkb9GgP8/XzXZbKe7bII/AAAAAAAAepM/UKQUGLl0CC06pS5xab1seELmdvf4-tH_wCLcBGAsYHQ/w400-h400/3C771FCD-64D4-491A-B8D7-F6AF60F41AB2_1_201_a.jpeg" width="400" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><p class="p1" style="font-family: "helvetica neue"; font-size: 14px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; text-align: center;">A painted Hamilton rock made August 2020</p><p class="p1" style="font-family: "helvetica neue"; font-size: 14px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px; text-align: center;"><br /></p><p class="p1" style="font-family: "helvetica neue"; font-size: 14px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span class="Apple-tab-span" style="white-space: pre;"> </span>The hardest part of my grief has been questioning my own mortality. The musical asks, ‘why am I still alive while all my friends have died.’ I wonder if there’s a reason for me to have lived as long as I have. I still think I should be the one who died not my friends. Survivor’s guilt is too real. It is an angry kind of pain. The kind of pain that makes you so angry that you want to throw something and scream. It is not fair I get to keep living life while their lives ended so abruptly. I graduated from high school. I studied in New Zealand. I spoke in front of 32,000 people. I made it through college. I met the love of my life and got engaged. Many of my friends can’t say they were able to do all of the things I have. I compare my circumstances to that of those who have died— Maybe I am older, sicker, we have the same diagnosis, or I survived the medical procedure that they did not. It doesn’t sit well with me to know there are babies much younger than me with my diagnosis who died from this disease while I am here at 22. They never had a chance. I know it is not possible to trade my life for theirs but that doesn’t mean I don’t want to. Why the hell am I alive? I ask myself that question a lot. It does not make sense as to why I have lived. I don’t think I am more deserving of living a long and good life as compared to the lives of my friends who have died.</p><p class="p1" style="font-family: "helvetica neue"; font-size: 14px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span class="Apple-tab-span" style="white-space: pre;"> </span>But who is to say next time it won’t be me who dies? Which leads to me to my next question when will it be me? I don’t want it to ever be me. It can’t be me, can it? There are so many things I haven’t done. I haven’t traveled to Europe or Australia as I have wanted. I haven’t had a TikTok go viral. I haven’t finished writing my book. I haven’t been swimming with sharks. There are so many books I haven’t read and movies I haven’t watched. And I haven’t done enough for the community I advocate for. I haven’t left a meaningful legacy. I have not finished my narrative. I want more time. But I also know I might not have more time because of my circumstances. It seems like Hamilton felt that way too. He did what he could while he was there. He kept writing and fighting because he wanted his legacy to help teach others and to help them grow through the systems he put into practice. To him, the impact he would make in the future by finishing his own narrative is what mattered. I only hope I can manage to make such an impact.</p><p class="p1" style="font-family: "helvetica neue"; font-size: 14px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span class="Apple-tab-span" style="white-space: pre;"> </span>I recognize many of the feelings I shared above are universal. What the chronic illness community goes through after each loss is unimaginable. Nobody outside of our circle will be able to comprehend what we go through nor do they want to. I don’t want anyone to feel how I feel but my grief is shared amongst a community of people— knowing that is the one thing that makes this pain easier. At least I am not alone in all this. I have friends with me through this chapter of my life. We have the opportunity to help one another. We often help each other until the very end, until our death. Our tiny community struggles to grieve our losses together. I don’t have answers to many of the questions I asked above. The only thing I do is know is that while this is horrific, painful, and gut-wrenching I would rather love these friends knowing I would lose them rather than never having loved them at all. These friends have changed my life by making this fight feel not so terrible after all. As said in Yorktown, “If this is the end of me, then at least I have a friend with me.”</p><p class="p1" style="font-family: "helvetica neue"; font-size: 14px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px;"><span class="Apple-tab-span" style="white-space: pre;"> </span>I am so thankful Hamilton has brought me great solace while processing and understanding my own losses and grief. I have needed a sense of direction and healing over the last few months. While I know Hamilton will not be able to heal me I know it has been a good place to start.</p>Michaela Shelleyhttp://www.blogger.com/profile/08846303698202380222noreply@blogger.com0tag:blogger.com,1999:blog-4197203465945553334.post-38176845569856631632020-03-31T19:40:00.002-04:002020-03-31T19:43:55.121-04:00One Year Since Brain Injury Entered My Life<div class="p1" style="font-family: "Helvetica Neue"; font-size: 12px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
A year ago my brain was destroyed… Okay well maybe it wasn’t completely destroyed but there are days it sure does feel like it. Over the last few weeks, I have been processing more on the emotional impact this has taken me. When most people ask me about my emotions they are surprised to find out I am in the stage of limbo. This is because since day one they have been heartbroken and devastated for me. However, that is a privilege they possess that I do not. They have the privilege to reflect on and grasp the enormity of my situation. They have been given the chance to not only let go and breathe. While I and those walking alongside me have been under a constant assault. Since last April our lives have been moving faster than a bullet train. We are more than overwhelmed. Each time I think we will get the chance to try to jump we wind up missing the platform. We are now forced to start over again. Otherwise described as the never-ending train of setbacks.</div>
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<span style="font-size: xx-small;">From Traumatic Brain Injury Support Group on Facebook</span></div>
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A few weeks ago, I was talking with one of those people who are walking alongside me. It was brought up about how the one year anniversary is rapidly approaching. So what should we do about it is the question? Celebrating the unimaginable does not seem like an appropriate response. And with our current social distancing climate that is even more inappropriate. Although, some cake would be nice... But in all seriousness, this day can’t go unrecognized. I have endured far too much pain for the day to be swept under the rug, so for my own sake, I need to acknowledge how hard I have fought. Others try to acknowledge this by telling me how incredible I am for making it through the last year. However, I don’t always believe them; all I see is the number of times I have cried, the number of times I have wound up unconscious somewhere, the number of times I do not remember events in my day, the number of times I have not been able to do a task that was once so easy for me, and the number of times I have felt like a failure.</div>
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No matter how much I plead, I will never be who I was before. And I know all too well who I was and what I did the day before the “day that changed it all.” It was the final day of my spring break, junior year of college, a Sunday. It was my best friend’s last day in town before she headed home. We went to Carowinds the day before and did not get home till late so we slept in skipping church, my mom took us both to get donuts, then took a trip to target. We had a final hurrah before she left at the local pizza shop where we ordered Mac and Cheese pizza. Hannah left and that was it. It was just me and my mom until she left for work the next day and I went back to my first day of classes. On Monday I went back to make it through the entire day without a single worry. I did not feel off at all during that day. The last thing I have a true memory of is sitting down at home to do homework.</div>
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Then in a matter of hours, my entire world was altered. Since then I have been left feeling trapped by this situation. I feel trapped by these experiences in which I cannot control because my brain is broken. My brain is learning how to work again. This is not something I will ever escape from pretending it never happened. Healing from a brain injury will be a life long healing process. Recovery has no end; it won’t turn out like a cookie cutter Hallmark movie. And even if it did that does not make the process to get to a state of recovery any easier. Brain injury recovery is hard and it is certainly not without suffering.</div>
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The last year has changed so much about who I am and what I intend to do in the future. Despite all this I know: I am still hurting. I am still struggling. But I am still alive. I am still here. And that is the real privilege.</div>
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Michaela Shelleyhttp://www.blogger.com/profile/08846303698202380222noreply@blogger.com1tag:blogger.com,1999:blog-4197203465945553334.post-17820755169394863172020-03-12T20:37:00.002-04:002020-03-12T20:40:47.346-04:00March is Brain Injury Awareness Month<div class="p1" style="font-family: "Helvetica Neue"; font-size: 12px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;">
Public Service Announcement: March is Brain Injury Awareness Month. March also marks 11 months since the event that led to my brain injury. I am still unable to fully comprehend what happened to me on April Fools Day 2019. Yes, I know the details of the events that occurred on that day. For some odd reason, my blood sugar hit 23 causing me to have a seizure. This left me unconscious for roughly ten minutes and I finally came back while EMTs were stabilizing me to be transported to the hospital. However, I still am unable to fully understand what actually occurred on that day. How could this single episode, this one seizure, which lasted only a handful of minutes flip my life around like this? I don’t recognize who this young woman is when I look back at myself in the mirror and that is terrifying.</div>
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My injury has left me at a complete loss. I have difficulties in social settings, abnormal sleeping patterns, my ability to read, see, and the concentrate is impaired. I struggle with uncontrolled epileptic seizures, significant memory loss, migraines, fatigue, emotional lability, heightened sensitivity to lights and loud noises, slurred speech, tremors, and the inability to regulate my body’s blood sugar level… The unfortunate reality is as it appears I will live with all of these things for the rest of my life. I hope things will improve once we get epilepsy under control but the truth is we don’t know.</div>
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At the beginning of last summer, everyone believed my brain damage would not be permanent. I was making strides that led us to believe I would recover. Clearly, that was not the reality. Maybe we were living with rose-colored glasses? Or maybe we were naive? Everyone wanted to hold on to the hope that things would turn out to be okay. But I have learned the unfortunate reality about brain injury… Brain injury never goes away. I will never be okay. I won’t reach complete healing.</div>
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It is hard to explain what it is like to live with a life-altering brain injury to someone who has never experienced one for themselves. I hope what I have to say about my experience helps you understand my world a little better…</div>
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I have sat in class staring at my sheet of paper blankly after forgetting how to spell the word ‘background.’ I cried.</div>
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I did not know I would unreasonably sob because I lost where I put my headphones. I never cry but in the last eleven months I have cried more than I ever have before and some days I don’t understand myself why I am crying.</div>
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I never thought my friends would be ripped out of my life.</div>
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I wish I knew how many people would up and walk out of my life because they are so terrified I might have a seizure that they decided to quit wanting to spend time with me. I know some people can’t handle my fight. I know people are scared. Hell, I am scared too and that is more than okay. But you know what? I would rather have someone tell me that instead of shutting me out of their life without having said a word.<span class="Apple-converted-space"> </span></div>
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I am still the person I was on March 31st, 2019. I want people to remember that me. I still have that inside of me but the only difference is my brain is broken. It hurts seeing posts on social media. I look at these posts and think I should have the opportunity to be there too. I have missed out on more than you can imagine because the world assumes I am too sick to go hang out with them. I have been shut out and left out on far too many social events. These are the activities I crave and the ones that make me feel normal.</div>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "helvetica neue"; font-size: 12px;">March 31st, 2019 with my best friend on the last day of Spring Break before heading back to finish up the spring semester of my junior year.</span></td></tr>
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I never thought I would go from an A student to a student who is failing exams because my brain would affect my ability to learn like I once did. I now spend weeks having to write a paper for class even for my blog posts.</div>
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I didn’t think I would be terrified to spend time alone and that my independence would be taken from my hands.</div>
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It is incredibly frustrating to live when most days you don’t even remember what kind of life you are living. At the end of the day, I am unable to remember half of the things that happened.</div>
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Every day I feel as if a storm is occurring inside my brain. Every misfire in my brain feels like a lightning strike. All my thoughts are swept up by the wind and thrown around without care. The sound of the rain drowns out the rest of the world so I can’t focus on anything but the storm. It is the storm that is ripping my brain apart and I hate having to live through this experience. But this storm has me trapped and I have nowhere to run.</div>
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I was never good at asking for help before this but now whenever someone asks me what I need my mind goes blank.</div>
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However, the good news is we adapt to our newest set of circumstances.</div>
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Everyone adapts in order to survive, but we don’t always see the small adaptations we have to make in our lives because they typically are not as monumental as a brain injury. Brain injury is an adaptation that completely alters everything. Adaptations are not supposed to be comfortable. I will be the first to tell you my experience has not been enjoyable. It has filled me with so many new questions, unknowns, and terrifying conversations. I wish I knew brain injury would alter my life in the way it did.</div>
Michaela Shelleyhttp://www.blogger.com/profile/08846303698202380222noreply@blogger.com1tag:blogger.com,1999:blog-4197203465945553334.post-10003716248226343772020-01-16T20:45:00.000-05:002020-01-17T13:17:02.729-05:00When Chronic Illness Interrupts Your Life Plan<style type="text/css">
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I have come to the conclusion the hardest and most encompassing problem sprung upon me since my recent brain injury and epilepsy diagnosis is my independence or lack thereof. In turn, this has also led to the loss of my identity. Only now as I find myself struggling to endure this pain for a second time I have come to realize I can try to tell myself I have been here before because in part that is true, but the truth is enduring this pain for a second time will always be harder than the first time ever was.</div>
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The first time I endured this kind of heartache, I was fifteen. It was not easy having to start over again in the midst of high school. I had all these adults in my life asking me questions about what I wanted to do in the future. These seemingly innocent questions are standard for most people of that age group. Prior to the time when I was sick, I could easily answer their questions. I had a plan. It was a plan that was made when I could still play the sport I loved since I could walk, when I could get out of bed in the morning without any pain, and when I did not struggle to make it through school. However, following my health decline, I often wondered if the adults asking me these questions thought about the implications of my diagnosis? Did any of them realize I had recently been told it was uncertain if I would even have a future? It was at the time of my diagnosis my answers to their questions were forced to change, and by doing so, it altered the person I thought I was becoming into the person people have come to meet, know, and read about today. This felt like I was being taught how to swim by being thrown into the deep end of the pool without a life jacket. Yes, I did eventually learn how to swim, not because I wanted to but because I had to. I was not going to let myself drown. My life needed to continue so I adapted, I kicked my feet so hard, and I fought like hell to create a different kind of life because although different than the life I had before, I could see it was still a life worth living.</div>
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However, these are also the coping mechanisms that have led me to cry about the person I used to be and the person I have been forced into becoming. A person who feels so different than she once was that she now questions who she even is because there is no way this stranger could ever be me. I will never be the me I once was— that person has now ceased to exist. This can be true for all people because we are in a state of continuous change. There is not one person out there who has the ability to go back to who they were five years ago or even five minutes ago, but the kind of evolving identity I have experienced is far from ordinary. Once a person reaches emerging adulthood, the identity by which they have chosen to identify with becomes fairly stable. This allows a person to establish a sense of continuity and security— a luxury I will never have. The trauma, the fear, and the chaos of all that has happened to me changed me in ways that will never allow me to feel safe again. I will always want back what I lost. I will always be angry that the life I want to live is not mine. I will spend the rest of my life grieving those losses because this is not something you get over. This is not the common cold. I won’t get better in a few days or even weeks for that matter. My recovery has no end. I know I have never been the same since I was thrown in the water, but maybe that is a good thing… Maybe I was thrown into the deep end of the pool to be reawakened by the waters. I am being reconstructed as someone new so I will become a completely different person to meet the needs of what the world needs now. Since I came out from under the water, I have found myself continuing to grow each day. Knowing that I believe I will be okay because what is the point of life if we don't learn, grow, and dare to achieve what everyone else deems to be impossible a possibility.</div>
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Michaela Shelleyhttp://www.blogger.com/profile/08846303698202380222noreply@blogger.com1tag:blogger.com,1999:blog-4197203465945553334.post-82076572543109880722019-11-27T20:33:00.000-05:002019-12-30T17:47:51.035-05:00In The Fight of My Life<style type="text/css">
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<span class="Apple-tab-span"> </span>For the last several years, I have been trapped in a boxing ring. The opponent? Twice my size and has been throwing one punch after another until I fall down and hit the ground. In the beginning, it was easier to get back up each time after I took the fall, but lately, my battered wounds and aching muscles have made it so much harder to get back up again. I am bleeding, hurting, full of tears and I look radically different than when I entered the ring.</div>
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<span class="Apple-tab-span"> </span>More recently, I began to have an increase in seizure-like episodes, which have also since progressively worsened in their severity. Presently these seizures are happening multiple times a day. I have not had a seizure free day in weeks. Originally believed these episodes were related to the brain injury I developed as a result of the hypoglycemic episode which caused a seizure back on April 1st, 2019. However, my neurologist had other diagnoses in mind so following extensive testing I was diagnosed epilepsy. This diagnosis has dramatically changed my life. I can no longer drive because of the seizures. The medication I take to treat the epilepsy is not stopping the seizures, instead, it has only left me with a number of debilitating side effects. I can’t be alone for an extended time out of fear I may have a seizure and no one will be there to help me. I can’t travel. I should be with my friends doing all of the fun things we planned together, instead, my friends spend time together without me as they are afraid of what could happen if I had a seizure. I am merely fighting to survive and the only way I can live is by relying on the rest of the world.<br />
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<span class="Apple-tab-span"> </span>This dependency upon others for the most basic of needs has left me feeling awfully vulnerable. And I HATE it. I am a wildly independent person. That’s an understatement. I would rather do anything than ask for help from those around me. This has nothing to do with the people who surround me. I know my true friends and family who make up my support system love me endlessly. Countless times these people have proven to me they intend to stand in the boxing ring with me through it all— to them, I am not a burden, but no matter how many times they say this, I still don’t fully believe these words to be true. Honestly, I am not sure why this is the case… Maybe it is because I have already lost so much, I am afraid of losing even more because people asking for help invites people in to see the broken parts of me I so easily hide by living life all on my own.<span class="Apple-converted-space"> </span></div>
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<span class="Apple-tab-span"> </span>When I step into the boxing ring to fight this fight without help then I am the only one who has to face the punches, except my current situation requires me to bring other people into the boxing ring with me. I have to bring my friends and family into the boxing ring with me knowing they too will face the same pain from those punches that have left me battered, bruised and broken on the ground. It sucks asking the people you love to join you in the boxing ring. I feel horrible asking my support system to carry my burdens and my hurt. No, I do not directly hurt others by inviting them to fight with me, but by inviting them to fight with me I know they will experience my devastation and heartache. Maybe that’s why I have rarely asked for help? I want to protect my support system from my devastation and heartache. I highly doubt when they entered my life most of them realized boxing would quit being a spectator sport, but very quickly they were forced to play a sport they did not necessarily ask to be apart of, yet most of them have still fought with me anyways. In the beginning, my support system started out as spectators to my fight there were a number of emotions they never had the chance to experience. Yes, people see the emotions I face from the outside looking in but life is so much different when you sit in the audience versus when you stand in the ring. But now that those people are in the boxing ring with me they see how the opponent or my disease affects everyone involved in my care, my family, my relationships, and my friends. I am not the only one who looks radically different from the start of the match.</div>
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<span class="Apple-tab-span"> </span>But isn’t that what love is? Love is sticking beside someone through their worst. Love is proving to a person you will be standing by their side supporting them through their struggle. Love is growing together, carrying one another’s burdens and changing each other’s world. So thank you to those who have loved me through all of the devastation, heartache, and in the times when I felt like I was unloveable, a burden or didn’t need anyone in the boxing ring with me.<br />
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<br />Michaela Shelleyhttp://www.blogger.com/profile/08846303698202380222noreply@blogger.com0tag:blogger.com,1999:blog-4197203465945553334.post-74504334199927050112019-08-22T20:00:00.000-04:002019-08-22T20:35:44.763-04:00How I Reacted To My Terminal Diagnosis As A Teenager I was an explorer, running through the ancient city at a strong pace, when I stumbled upon an obstacle in my path causing me to be captured by the monkeys that were chasing me. I was just short of beating the all time best amongst my friend group in the game Temple Run, because after nearly four weeks in the hospital I had become a pro. It was a knock at the door which threw off my concentration. Although this was pretty standard, considering the fact that medical staff walked in and out of my hospital room all day, there was something different about this knock. It was "the knock" everyone with a story like mine talks about. Whether it be a knock, a phone call, or the ring of a door bell, it marks a pivotal moment in which everything that person knew to be good, safe and true has been altered. For me that knock at my hospital door meant a terminal diagnosis at the age of fifteen. In the many moments since my diagnosis, I have learned we seem to throw the big picture out the window when our brains have been given this kind of life changing news. I didn't have the capacity to think or focus on the future of my life, so instead my brain blurted out the first thing I had the ability to think of.<br />
So what did I say? The first words to come from my mouth are not ones most people would expect. I said, "I'm sorry, Mommy." I am sure the question going through most of your heads is, "Why would she feel the need to respond with that?" And it is a fair question to ask. To be honest, I was never able to understand why I responded with what I did until I saw it in the movie, <i>Five Feet Apart</i>. In case you've never heard of the movie before, it is about two young adults, Stella and Will, both diagnosed with <a href="https://www.cff.org/What-is-CF/About-Cystic-Fibrosis/" target="_blank">Cystic Fibrosis</a> who fell in love while receiving treatment in the hospital. However, due to their diagnosis they must keep their physical distance from each other because they could make each other sick. In a specific scene of the movie, Will and his mother learn from a doctor that the clinical trial drug has failed to improve his overall health. We watch as Will, a seventeen year old boy pretends like the news did not hurt him that bad and like myself, we saw him crumble as he apologized to his mom for failed treatment, for his disease, and for being a burden. Will truly believed he had control over the final outcome, that he not only failed himself, but also his mother and his entire medical team. It was this scene that paralyzed me, because I knew in that moment exactly how his character felt.<br />
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I, too, said I am sorry- not out of fault, but rather out of the deep pain I believed I was projecting onto others because I failed to recover. Although no one can place blame on me for my diagnosis, I knew the only reason everyone was suffering was because of myself, the financial stress, the separation of our family while I was in the hospital, the emotional devastation of such a diagnosis, and our entire life was forever altered in a matter of minutes. I felt like they needed to know how hard I pushed my body to try to function normally, but the disease was taking over. I could not win. I was losing, and for that I was very sorry, so that is the only thing I could muster up the courage to say, "I'm sorry, Mommy." When people come to me curious about how I responded to my diagnosis, I come to learn many have it all wrapped up in their heads how they believe they will respond when given news of a diagnosis. Sometimes these people even tell me I responded incorrectly to my own diagnosis, whatever that is supposed to mean... When we face a tragedy, we are thrown into this new terrifying phase of what is supposed to be our life and told to make do with it while the rest of the world expects us to have a sensible reaction to something that isn't sensible to begin with. They say somehow, in some way, I should have responded by immediately jumping into fight mode by asking what my chances are, the protocol being established for my treatment, or another beneficial question along those lines. I believe they expect this because the rest of the world is still carrying on without their life shattered at their feet. They have the luxury of rational thinking, an emotion that trauma deprives of us.<br />
Going back to the app, Temple Run, imagine the game as the experience of learning of and reacting to life-altering news. The game begins slow as the explorer runs through the city but as it continues the explorer's running pace becomes faster as they continue through their day to day life. For the explorer it seems like out of nowhere a couple rocks appear in their path causing them to stumble, like the unexpected diagnosis which uprooted my life. When the explorer stumbled on the rocks they might have had the breath knocked out of their lungs. Still the explorer must keep running before they had the time to process what hit them because there's a game to be played, similarly to how there's a life to be lived. What they don't realize is that we don't get to be the explorer who can take a break by pressing pause until we are ready to play the game again. We don't get a break to figure out how to respond to the news, we just react. Most believe they will respond by breaking down sobbing how they don't want to die, how this is not fair, that they will ask a hundred questions regarding the outcome of the events, or something similar focusing on the big picture. Instead our responses might be brief, we might be so numb we don't react at all, we could be speechless, unable to express appropriate emotions, or like myself, we might apologize for something that was never our fault to begin with. You are not required to be inspirational throughout all the shit you have been forced to endure.The reality is when you are struck with the weight of the news regarding your tragedy, it uproots everything we know as good, safe, and true leaving you with nothing. It is normal to feel completely lost after receiving life-altering news, so don't you ever let anyone make you feel otherwise.<br />
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September 2013: 3 weeks into hospital stay that led to my diagnosis</div>
Michaela Shelleyhttp://www.blogger.com/profile/08846303698202380222noreply@blogger.com1tag:blogger.com,1999:blog-4197203465945553334.post-9084089575770383732019-07-25T21:47:00.001-04:002019-07-26T10:52:23.881-04:00I Do Enough.I do enough even on the days I don't feel like it. Repeat that and remind yourself of just how worthy you are. Unfortunately, I don't always automatically accept this truth as confidently as I should. It is a deeply rooted struggle I have held within me for years. Most days I feel like I could be and should be doing so much more than I actually am. I believe I could always bring more awareness for a cure, work harder in school to get better grades and provide more support to my friends and family. Yes, I am sure that sounds ridiculous to many who are close to me or who have followed my life story because you may think I have done more than my fair share but it is true. I say all of these things even though...<br />
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<li>I write a blog read by thousands across the world to advocate and change the treatment in healthcare settings for adolescent and young adult patients.</li>
<li>At fourteen I founded an online support group for teens and young adults with feeding tubes so that they could feel as though they are not alone in all this.</li>
<li>Almost seven years later that support group has served and is still serving more than five hundred young adults from nearly twenty countries.</li>
<li>I still maintain a GPA worth celebrating while achieving an undergraduate degree in psychology while many with my condition are unable to attend school at all.</li>
<li>I am loved by my friends and family for being the person I am without any exceptions.</li>
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Now please hear me out. Even though I do not believe I am doing enough, I am still proud of these very things. Those accomplishments were achieved because growing up my mother ensured I worked hard to be more than my disease. By all standards my mom wanted me to live a typical life, so she pushed me to fight beyond what I was feeling in order to do what I could when I could without allowing myself to be held back. (And mom if you are reading this please know how I feel is not due to any failings on your part. You did exactly what you should have done. You tried to give me a relatively normal childhood. You gave me a sense of normality and for that I am thankful. It was exactly what a mother was supposed to do.) I never once used my disease as an excuse for a reason as to why I could not do XYZ. Early on it was made known to me that my disease was not a barrier for my dreams, which is an important distinction for a young person with a chronic health condition or disability.<br />
However, pretending one is able to ignore their disease can also be detrimental because it makes that person believe they are supposed to have it all together in the same order as their able-bodied peers. Somehow I fell for this twisted mindset. I fell for the idea of how I thought things were supposed to be and thought if I could keep pushing through, then I too would be able to meet those same standards as my able-bodied peers. This belief made worse by the thought I could always be doing more if my body was not putting limits on me, my perfectionistic personality coupled with the comparisons I make of myself to my able-bodied peers is why I struggle so deeply with doubting my abilities. This way of thinking made me believe I needed to prove to everyone else that I could do what my able-bodied peers were doing. It is why I am the kid who went to take finals while falling into the downward spiral of septic shock, that could have easily taken her life. It is why I felt guilty for postponing an exam after being diagnosed with a brain injury. It is why I never let myself take a break from trying to accomplish my goals even when my health is trying to pull me under. It is why I am the person I am today. Through all of these things, I have come to realize I will likely never measure up to those same standards held by my able-bodied peers and that is okay. Maybe if I did not get diagnosed with a brain injury I would have done better on that exam but that is not how my life happened. I need to quit thinking I was cheated of something I thought I deserved because I thought my life was supposed to be different. That's not true. My life was supposed to be exactly how it happened and I happened to get sick. That's just how things worked out. So instead of focusing on doing things the same way as my peers, First recognize that my disease does not block me from reaching my dreams. Then acknowledge the limitations my body has placed on me rather than pretending like they do not exist because I can still make a difference even with a little extra help along the way. My work is no less important because I need accommodations. What work I am doing is still filled with value. Celebrate the accomplishments in your life, even the small ones. And remind yourself just how worthy you are, even on the days when you don't feel like it.<br />
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<br />Michaela Shelleyhttp://www.blogger.com/profile/08846303698202380222noreply@blogger.com2tag:blogger.com,1999:blog-4197203465945553334.post-35054775460630607942019-06-10T21:08:00.002-04:002019-06-11T07:44:30.035-04:00I Can't Be Fixed<div style="background-color: white; color: #222222; white-space: pre-wrap;">
For those of you who are unaware on April 1st I suffered a seizure caused by a blood sugar reading of twenty three. (If you aren't up to date on your medical information that’s the lowest of lows. ) Thankfully I was not alone when this occurred, my Mom was immediately able to get me the help I needed so I was only unconscious for ten minutes, but unfortunately I did not walk out of this event unscathed. I have been left with a brain injury that has affected my ability to read, see, memorize, concentrate and speak appropriately (and more). More than two months later, we have continuously struggled to keep my blood sugar at a stable level and medical professionals have been unable to determine how and why this has only recently begun to happen to me. While trying to figure out how I was going to proceed with recovery I decided upon pushing through the last few weeks of my junior year of college and then worry about my health. I told my medical team, friends, family, professors, followers of my story and everyone alike that this would be the summer of fixing me; the summer of fixing me in order to make me, me again. However we are now a month into summer break and I have not seen any signs of fixing occurring here. Only now am I beginning to realize that “being fixed” is not a real thing?</div>
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Heading into this summer I thought I was repairable. I thought there was something out there that could make me into the person I was before this traumatic experience happened to me, something that would make me feel like me again because through this whole brain injury thing I have not felt like me. However I have since learned I can try to heal and mold into a version of my self pre-trauma, but that replica will never quite be picture perfect, just like a vase when one glues the broken pieces back together.</div>
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Have you ever heard of the logic you can’t fix what’s not broke? I first believed I can't be fixed because I am not broken. There is nothing wrong with me. I am not damaged goods. I am not the fragmented pieces to a mirror after it has been shattered. I am an almost twenty one year old flooded with dreams and plans to THRIVE, living within a broken body failing almost as fast as ice cream melts in the summer sun. In general that’s one of the hardest parts because I know I am not broken, but I know for a fact I am not a typical young adult. This disease is the iron shackles on my plans to explore what this world has to offer, while also keeping me caged by the physical limitations I have been sentenced with.
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Since my brain injury I have been battling back to become a fully functioning human. The unfortunate news is that living with mitochondrial disease the only thing that most doctors can tell us for certain is that my my health will only continue to decline. Mitochondrial disease is a degenerative condition, meaning as time goes by the condition worsens. I already have multiple organ systems that are dysfunctional or failing and we have known for quite a while that it is only a matter of time before we saw other organ system involvement as well.<br />
As I mentioned above medical professionals were unable to determine why my blood sugar has repeatedly dropped so low without explanation. I was sent to a specialist. My last appointment was one week ago. We did a good number of blood panels and unfortunately nothing remarkable appeared that would explain what I am experiencing. We had one of those hard discussions that nobody wants, especially before nine on a Monday morning even more so just a couple weeks before your twenty first birthday. In simple terms since we had no other explanations for what has been causing this she’s fairly certain my endocrine system, specifically the blood sugar regulation portion is now dysfunctional and/or is beginning to fail as a direct result of my mitochondrial disorder. This means that there’s not a permanent course of treatment for any of my low blood sugar episodes like we hoped. Again this is something that cannot be fixed. I can only adapt my current life in order to cope with what I have been given. We hope we can get this to a point where my blood sugar episodes become less complex to manage. </div>
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Despite adding yet another organ system to the never ending list of failing body parts I have, I was given a glimmer of hope at this appointment! Since being out of school for summer I have been able to rest my brain, get a decent amount of sleep and not be stressed all the time which has absolutely helped in recovering from the brain injury. We were originally led to believe that the damage to my brain would be permanent however I have made huge strides since being out of school and my doctor is hoping this will not be the case. God willing I should be functional by the time my senior year of college starts at the end of August!</div>
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Following my injury I did not leave the hospital fixed, nobody does that’s not how life works, but I did leave the hospital changed. The old me is gone and for better and for worse I am a different person who has adapted to my newest set of circumstances.</div>
Michaela Shelleyhttp://www.blogger.com/profile/08846303698202380222noreply@blogger.com0tag:blogger.com,1999:blog-4197203465945553334.post-55714426915093291102018-11-15T20:31:00.001-05:002018-11-15T21:05:37.488-05:006 years...November 16th, 2012...<br />
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<a href="https://3.bp.blogspot.com/-tHDMWE0QgPU/VNqqZnpSdaI/AAAAAAAAA0Q/J1qH2ofdOmklU1F0sVyczaID-MukSzqnQCPcBGAYYCw/s1600/IMG_0032.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="591" data-original-width="592" height="319" src="https://3.bp.blogspot.com/-tHDMWE0QgPU/VNqqZnpSdaI/AAAAAAAAA0Q/J1qH2ofdOmklU1F0sVyczaID-MukSzqnQCPcBGAYYCw/s320/IMG_0032.jpg" width="320" /></a></div>
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6 years ago I became dependent upon a feeding tube. They told us this would be a temporary thing; that I would stop eating food entirely for three weeks, then we would slowly reintroduce food until we could find which foods I could tolerate and which foods were making me ill. They thought the process would take three months at max, but two months in I only had three safe foods and none of them could sustain me nutritionally.<br />
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Here we are six years later and if you have read my blog before you would know, the whole idea of temporary is obviously far from the case... In fact, my health is now worse than it was six years ago. But today I do not want to sulk in the sadness of what I thought my life was supposed to be like. Today I want to celebrate what was made possible because of this day six years ago. I was 'lucky' when I had my feeding tube placed because my brother already had a feeding tube so my family was well connected to the online community support groups. Shortly after having my tube placed, I realized there was no online support group specifically for teenagers with feeding tubes. The need was there but no one was stepping up. I decided I couldn't wait for someone else to put forth their time to create a safe space where teens and young adults could realize they aren't the only ones having this experience, a place where they have friends who simply 'get it' and a safe place they can vent about their feelings away from their parents.<br />
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Because of this day six years ago the discussions began, that allowed me to create the "Teens with Feeding Tubes" online community. On November 26th, 2012 the group was officially launched. Currently, our community has roughly 350 members, from nearly 20 countries, and has served more than 500 young people in six short years. Unfortunately, in those six years, thirty-seven members of our group have died due to their chronic illness. It's the most heartbreaking part of being in this group. We have chosen to seek out others in situations similar to our own because we know how devastating it is to feel like no one understands what we are going through, but we would rather love them knowing our hearts will break than never knowing them at all. It is a privilege to have known them. It is a privilege to have loved them.<br />
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Today I made a post asking members of the online group to finish the statements and the answers blew me away. They reminded me how important the work I do is even on the days when I think I have nothing left to give, even on the days when I wish I never got sick in the first place and even on the days when I think I am not doing enough to make a difference. They remind me that what happened to me six years ago today was not a mistake. I hate the "everything happens for a reason" cliche just as much as the next guy but if I had to endure some hell for a little while to help make someone else's burdens lighter then it is all worth it.<br />
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With their permission, I wanted to share some of their responses with you:<br />
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<blockquote class="tr_bq">
"This wonderful group has given me confidence, knowledge, a laugh on a bad day, a virtual hug when another person is taken from this world by different illnesses, inspiration, a distraction from pain or just life in general, a smile when needed most, strength, but most of all hope. This group has given me hope of what I can achieve like going to school, being a normal teen, or go to college. Hope that maybe my health will improve one day but also that if it doesn't imporve that where I am right now is okay and there is hope." - KB</blockquote>
<blockquote class="tr_bq">
"This group provides me with a support system where I don't need to explain. Everybody just knows... And that is the most priceless gift God has given me." -TM</blockquote>
<blockquote class="tr_bq">
"This group has provided me with the confidence to bear my tube unapolgetically." - EK</blockquote>
<blockquote class="tr_bq">
"This group has brought me something I would have never expected: comfort." - ER </blockquote>
Michaela Shelleyhttp://www.blogger.com/profile/08846303698202380222noreply@blogger.com0tag:blogger.com,1999:blog-4197203465945553334.post-67689019540356157382018-09-19T17:15:00.002-04:002018-09-19T20:06:32.293-04:00What Is Mitochondrial Disease?<div class="MsoNormal">
“What is Mitochondrial disease?” They ask as I begin to go into my spiel that I have rehearsed a thousand times before. I tell them, “Mitochondrial disease is a terminal, genetic condition in which the mitochondria that create all the energy in a person’s body fail to function properly. This leads to organ failure and eventually death as the disease takes over. It’s a disease with no surgery, no magic pill, no treatment, no chance of remission and worst of all, no cure.”<o:p></o:p></div>
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But is that really what it is? With every passing day, I begin to realize I can’t explain Mitochondrial disease. I can tell you all of the statistics but that would mean nothing unless you have experienced this disease for yourself. Mitochondrial disease is so much more than the statistics, the physical symptoms, and the medical terminology.<o:p></o:p></div>
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“So what really is Mitochondrial disease?” They ask.<o:p></o:p></div>
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It’s the parent who searches their child’s diagnosis on the Internet only to learn that there are no treatment options, but that doesn’t stop them from trying to find something to save their precious baby.<o:p></o:p></div>
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It’s the teenager who is labeled as lazy, even though their body doesn’t have the energy to keep their organs functioning, much less get out of bed in the morning.<o:p></o:p></div>
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It’s the bride who will never walk down the aisle.<o:p></o:p></div>
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It’s the young adults who had to drop out of college because their health is too unstable.<o:p></o:p></div>
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It’s the parent who wants nothing more than to be able to care for their own child, but can’t even care for their self.<o:p></o:p></div>
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It’s the child who will never get on the school bus for their first day of kindergarten.<o:p></o:p></div>
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It’s the boy who went from being a star high school athlete to a boy who can hardly walk on his own. <o:p></o:p></div>
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It’s the siblings who have to cope with the thought of their brother or sister leaving this earth to live in Heaven.<o:p></o:p><br />
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“So what really is Mitochondrial disease?” They ask.<o:p></o:p></div>
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It’s a disease that has changed the course of my entire life.<o:p></o:p></div>
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It’s a disease that has brought me so much fear and uncertainty.<o:p></o:p></div>
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It’s a disease that has tried to stop me from pursuing my dreams.<o:p></o:p></div>
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It’s a disease that has forced me to face my own mortality.<o:p></o:p></div>
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It’s a disease that has made me cry myself to sleep.<o:p></o:p></div>
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It’s a disease that has robbed me of my high school years.<o:p></o:p></div>
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It’s a disease that has left me in earth shattering pain.<o:p></o:p></div>
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It’s a disease that has and always will be apart of me.<o:p></o:p></div>
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Mitochondrial disease is heartbreaking. It’s ugly. It's scary. It’s not fair. It's a nightmare I will never be able to wake up from. The medical implications of this disease are only half my story. No one will be able to know what mitochondrial disease until they experience it for themselves because it is in that moment when they realize all the emotional and social implications of the diagnosis. As much as I want people to understand what I am going through, I am thankful they do not know, because if they did then that would mean they have to live with the same horrors I have experienced. I wouldn't wish that on anyone. <span style="font-size: 12pt;">While I know the average person will never be able to see the strain this disease can place upon a person, I hope this post is a start. From here on out you'll never be able to sit back and say you were unaware of a disease that rips babies from the arms of their parents, that claims the lives of bright and bubbly teenagers, and that forces children to grow up without their mom or dad.</span></div>
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<div class="MsoNormal">
This is Mitochondrial disease.<o:p></o:p><br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://4.bp.blogspot.com/-8obew5P_X1I/VtED1ZZfdBI/AAAAAAAABMg/dNPiDMOwX6IpC2dyPaQLGexRWNfyv6fVACPcBGAYYCw/s1600/MichaelaS_Hope-0031.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1067" data-original-width="1600" height="213" src="https://4.bp.blogspot.com/-8obew5P_X1I/VtED1ZZfdBI/AAAAAAAABMg/dNPiDMOwX6IpC2dyPaQLGexRWNfyv6fVACPcBGAYYCw/s320/MichaelaS_Hope-0031.jpg" width="320" /></a></div>
<br /></div>
Michaela Shelleyhttp://www.blogger.com/profile/08846303698202380222noreply@blogger.com0tag:blogger.com,1999:blog-4197203465945553334.post-27541039095356539132018-09-16T13:11:00.003-04:002018-09-16T13:11:42.766-04:00If I Never Had Mitochondrial Disease<div class="MsoNormal">
If I never had Mitochondrial disease…<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I could live carefree.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I would only know that the mitochondria are the powerhouses of the cell.<o:p></o:p></div>
<div class="MsoNormal">
I would wince at the sight of a needle.<o:p></o:p></div>
<div class="MsoNormal">
I would have spent my high school years out on the soccer field.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I wouldn’t have scars like a road map across my body.<o:p></o:p></div>
<div class="MsoNormal">
My biggest fear would be having a tooth pulled.<o:p></o:p></div>
<div class="MsoNormal">
I would have all the energy to run around the world.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
If I never had Mitochondrial disease…<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I would take life for granted.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I wouldn’t know the power of a supportive community.<o:p></o:p></div>
<div class="MsoNormal">
I wouldn’t know how to swallow a pill.<o:p></o:p></div>
<div class="MsoNormal">
I wouldn’t know how to pronounce medications like canakinumab… much less spell them!<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I wouldn’t love a little harder.<o:p></o:p></div>
<div class="MsoNormal">
I wouldn’t be able to eat while I sleep.<o:p></o:p></div>
<div class="MsoNormal">
And I wouldn’t live a little deeper.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
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But most importantly if I never had Mito I would never be me.<o:p></o:p></div>
Michaela Shelleyhttp://www.blogger.com/profile/08846303698202380222noreply@blogger.com0tag:blogger.com,1999:blog-4197203465945553334.post-23898348540926609892018-08-06T18:11:00.000-04:002018-08-06T19:20:15.899-04:00People Don't Always Say The Right Things...<div class="" data-block="true" data-editor="anfot" data-offset-key="31co6-0-0" style="background-color: white; color: #1d2129; white-space: pre-wrap;">
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<span style="background-color: rgba(255, 255, 255, 0);">Let's face it– people don't always say the right things. Thankfully, the intentions of most people are good at heart, but often times the words they say don’t come out that way. </span><br />
<span style="background-color: rgba(255, 255, 255, 0);">It's hard to know what to say in difficult situations where there isn't much anyone can say to express their empathy and support to their friend in some of the darkest times of that friend's life. Mostly when people do this the words that come out of their mouths is only used to comfort or make them feel better about the situation rather than comforting to the person who needs the support. On a regular basis, I have encountered situations that go like the one above. When people find out I am chronically ill, they often respond with poor word choice, a sense of shyness, or inappropriate statements that force me into an awkward silence as I start blankly at them trying to figure out how I should respond– often times I am unable to respond. Here are a few of the statements I have heard that I feel people should refrain from using along with a couple of phrases about what to say instead:</span><br />
<span style="background-color: rgba(255, 255, 255, 0);">(Reminder... as crazy as it may seem, all of these words have been spoken to me at least once in the last few years.)</span><br />
<span style="background-color: rgba(255, 255, 255, 0);"><br /></span>
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<h3>
<span style="background-color: rgba(255, 255, 255, 0);"><span style="font-size: small;">1) <b>Refrain from saying: </b><i>After hearing your story, I realize my problems are minuscule in comparison to people like you who are living such horrible and tragic lives. It shows me </i><i>my problems aren't something I should freak out about, because many are going through so much worse."</i></span></span></h3>
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<span style="background-color: rgba(255, 255, 255, 0);">First of all, I don't like it when people are emotionally dismissive of their own problems. Phrases like this have always irritated me because I know there are countless people in the world with problems that might be worse than mine, but I also know that just because someone has it worse doesn't mean my problems are insignificant. Who are they to say my problems are worse than theirs? They aren't worse, they are just different. Life is not a competition of who is hurting more than the other. Secondly, the stranger tried to tell me about my life, as he made an assumption that my life sucks because I am sick. I don't think my life is horrible and only to an extent would I ever consider my life is tragic. Yes, bad things have happened to me and that's pretty unfortunate but there are still so many good things out there. The good always outweighs the bad, even in the most desperate of situations. I am still doing fairly well despite the events of my diagnosis. I am headed into my junior year of college, I spoke in front of 31,000 teenagers a few weeks ago, I have an amazing group of friends who are now my family, and I live in a community where I feel loved, supported, and valued. There isn't much more I could ask for!</span><br />
<b><br /></b>
<b>Instead, say:</b><span style="background-color: rgba(255, 255, 255, 0);"> </span><i>"Your story reminds me what really matters in life because despite all that you are going through you are still pressing on. It makes me realize I too need to be as resilient during my own struggles."</i><br />
<span style="background-color: rgba(255, 255, 255, 0);"><i><br /></i>By saying this, it does not dismiss the problems you are going through. This statement also acknowledges that I know what it means to struggle but doesn't express your view of my life as horrible.</span><br />
<span class="im" style="color: #500050;"></span><br />
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<span class="im" style="color: #500050;"><span style="background-color: rgba(255, 255, 255, 0);"><br /></span>
<span style="background-color: rgba(255, 255, 255, 0);">2) </span><b>Refrain from saying: </b><i>"I would kill myself if I was in your situation."</i></span></div>
<span class="im" style="color: #500050;">
<span style="background-color: rgba(255, 255, 255, 0);"><br />I would like to think that this one is pretty obvious as to why someone shouldn't say this but I guess not... Suicide is NEVER the answer! I don't understand how referencing it as an option could help someone "feel better" about their own situation.</span><br />
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<span class="im" style="color: #500050;"><b style="color: #222222;"><br /></b>
<b style="color: #222222;">Instead, say:</b><span style="background-color: rgba(255 , 255 , 255 , 0); color: #222222;"> </span><i style="color: #222222;">"I don't know what your situation is like, but I know it can't be easy."</i></span></div>
<span class="im" style="color: #500050;">
</span><span style="background-color: rgba(255, 255, 255, 0);"><br /></span>
<span style="background-color: rgba(255, 255, 255, 0);">By expressing this it shows the person that one can see their situation is challenging, even though they may not be able to relate to their pain on the same level.</span><br />
<span style="background-color: rgba(255, 255, 255, 0);"><br /></span>
<span style="background-color: rgba(255, 255, 255, 0);">3) </span><b>Refrain from saying: </b><span style="background-color: rgba(255, 255, 255, 0);">"I could never do what you have to do."</span><br />
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<span style="background-color: rgba(255, 255, 255, 0);"><br /></span></div>
<span style="background-color: rgba(255, 255, 255, 0);">A person can never understand what they are capable of until they are thrown into that situation themselves. I never thought I would be able to stab myself with needles every night but look at what I am doing now. It beats the alternative... There are many days when I don't want to do this anymore, but if I woke up one day and decided I couldn't do any of this anymore I would be dead– plain and simple. I still struggle with the idea of not wanting to do this, but I have to. As long as someone is provided with the proper support and love they too can make it through some of the hardest days of their lives.</span><br />
<span class="im" style="color: #500050;"></span><br />
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<span class="im" style="color: #500050;"><b><br /></b>
<b>Instead, say: </b><i>"I see you and I am here to support you."</i></span></div>
<span class="im" style="color: #500050;">
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<span class="im" style="color: #500050;"><span style="background-color: rgba(255, 255, 255, 0);"><br /></span></span></div>
<span class="im" style="color: #500050;">
</span><span style="background-color: rgba(255, 255, 255, 0);">Remind the person that they are never alone in their struggle. People need to be reminded that they are loved. They need to be reminded that there's a group of people who know they are struggling and want to help. While those people may never fully understand how challenging their struggle is, it is nice to hear someone acknowledge another's heartache.</span><br />
<span style="background-color: rgba(255, 255, 255, 0);"><br /></span>
<span style="background-color: rgba(255, 255, 255, 0);">I understand it is incredibly hard to know what to say when there is nothing to say and one doesn’t know how to help. Sometimes, it feels easier to say nothing at all, however, people don't always need you to help them through things. What they need is for you to listen to them– to sit by them and hold their hand. Sometimes that is the best thing someone can do for a person... Everyone can remind someone that they are not alone in all this. The truth is people suck but taking a step back from our busy lives to help another suffering soul can make all the difference in the lives of others.</span></div>
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Michaela Shelleyhttp://www.blogger.com/profile/08846303698202380222noreply@blogger.com0tag:blogger.com,1999:blog-4197203465945553334.post-27230813466111685782018-01-22T20:22:00.003-05:002020-01-22T10:38:46.358-05:00There Is No HopeFour years ago today the doctors told me I had no hope - <b>Damn, did I prove them wrong or what?</b><br />
<br />
Four years ago I was frozen by the conversations we began to have about my future following specialized medical testing, however, I still understood the big picture. The consensus of the conversation went along the lines of the doctors agreeing with the suspected diagnosis of Mitochondrial Disease, like my brother. I have total digestive tract paralysis in nearly every section of my gastrointestinal tract - medication would not make a difference in the functioning of my gut, and surgical routes no longer became an option. They said I would be dependent on IV nutritional support for however long my body chooses to hold out due to the long-term complications of IV nutritional support in combination with the overall condition of my body. While all of what he said has proven to be mostly true, my body has continued to hold out fairly well. No teenager should be forced into conversations like the one my family had in 2014. Unfortunately, every single day teenagers just like me are being forced comprehend and decide how they will respond to the devastating diagnosis.<br />
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When the news dropped, every thought racing through my head filled me with fear. For a little over a year prior to that day my life already felt as though it was crumbling underneath me. Everything I had built myself to be had began to had fallen apart. The news that the doctors told me was the final straw that broke me. Why did this have to happen to me? It wasn't supposed to be me. It's not fair! I wished I was an average teenager with an average teenager life. I wanted to be me, again. The me who played soccer every weekend, me who was an honors student, the me I was before I got sick... I was so angry with God and everyone even if it wasn't their fault. I did everything that was asked of me, I sat there and I took it. I stuck it out through all the scans, all the needles, the surgeries, the fifteen million medications, fatigue, sleepless nights in the hospital and the earth-shattering pain that seems like it will never end.<br />
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The days were long and each conversation we had with the doctor's left me feeling defeated. Even the doctors didn't have hope that things would get better, so how could I? I thought it was the end of my world. I was a terrified fifteen-year-old girl who was scared out of her mind while trying to process a very adult-like situation. No one could blame me for feeling that way though, even the doctors said they didn't think of much could be done to help my situation. I walked out of the hospital that day with a blank expression on my face. I didn't cry, I didn't speak, none of us did. We were all still trying to process what was happening. We got home a few days later as all of this information set in; I cried myself to sleep. I knew it was bad, but I didn't think it would be <i>that bad</i>. The thought of it being <i>this bad</i> didn't cross my mind because stuff like this isn't supposed to happen to someone like me.<br />
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<a href="https://3.bp.blogspot.com/-lN66SX2qYGY/WmaEHXZwT9I/AAAAAAAADUk/tEuqHP9Q6nMlkCuP0IJwRGWgryh_6pI-gCLcBGAs/s1600/IMG_1304.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="640" data-original-width="960" height="213" src="https://3.bp.blogspot.com/-lN66SX2qYGY/WmaEHXZwT9I/AAAAAAAADUk/tEuqHP9Q6nMlkCuP0IJwRGWgryh_6pI-gCLcBGAs/s320/IMG_1304.JPG" width="320" /></a></div>
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It is only now, years later when I can truly understand how far I have come since they thought I had no hope for a future of good quality. That doctor told me there was no hope but he was so wrong. I'd like to think I am filled with more hope now than ever. I realize each person has a different mindset regarding the concept of hope. Maybe that doctor and I had our eyes set on different goals. His idea of hope was that one day he would be able to restore my broken body. He had hoped I would get the chance to return to "normal" or whatever that may look like after going through a serious illness.<br />
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However, my hope is much bigger than a doctor saying, "I am sorry, there is nothing we can do." My hope is larger than life. My hope focuses more on being thankful for everything that I am, rather than everything I am not. I changed. A serious illness does that to people. The emotional scars leave bruises that will never go away. I am not the young girl that I was before I got sick. I am a writer, a big sister, a photographer, and a college student. My hope for nothing more than to get back to living. I don't care whether or not that idea of living is filled with fifty million medications and needlesticks as long as I can use my life to reach out and fight - not only for myself but for others who don't have that chance. My very last hope was and still is to advocate, speak out, lead and preach it. As Matthew West said in a song of his, "Because if not us then who?" So Lord, let it be me if you must. There are hundreds of terrified teenagers like me, who cry themselves to sleep as pain stretches over every inch of their failing body. Let my life be the reason that our society wakes up and makes a difference in how we support teenagers with serious illnesses.<br />
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Now more than ever my hope is roaring like a lion.<br />
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My hope is in the hands of God.<br />
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<br />Michaela Shelleyhttp://www.blogger.com/profile/08846303698202380222noreply@blogger.com1tag:blogger.com,1999:blog-4197203465945553334.post-22769584709054486972017-11-06T18:48:00.000-05:002017-11-06T18:48:54.922-05:00It Wasn't Supposed To Be Me<div class="MsoNormal" style="line-height: 200%;">
<span style="font-family: "times new roman";"><span style="mso-tab-count: 1;"> </span>My youngest brother, Tyler, was always known as the sick one in our family. <span style="mso-tab-count: 1;"> </span>Tyler was born seven weeks premature. He was a tiny little thing but relatively healthy. The doctors promised Tyler would lead a normal life once he left the NICU. They were wrong. Shortly before his sixth birthday Tyler was diagnosed with a terminal, genetic condition known as Mitochondrial disease. This disease has no treatment, no chance of remission, no magic pill and worst of all no cure. It was for this reason our family friends often labeled Tyler as the sick kid in our family. It was true, neither I nor my other two siblings had any obvious signs of the condition. Because of his health, I grew up believing myself to be his caregiver. I held onto this belief until my health collapsed shortly after Tyler's diagnosis. They didn’t need to say a word; the look on their faces was more than enough. I felt as though my life was sucked up by a tornado, spit back out and shattered into a million and one pieces. On that day, my belief took a new shape. I no longer had the mindset that it was not supposed to be me. After I cried it out, I picked myself up and forced myself to believe I was going to get through this with the help of my home team.<o:p></o:p></span></div>
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<span style="font-family: "times new roman";"><span style="mso-tab-count: 1;"> </span>That was until my health began to worsen around the time of Tyler’s diagnosis. At this time, my health was never made a priority because I always felt bad to complain when Tyler was often in and out of the hospital for weeks. To be diagnosed with Mitochondrial disease the patient should have at least three organ systems that were either failing or working inadequately. I did not yet meet the criteria, so the doctors brushed it off as nothing too serious. </span><span style="font-family: "times new roman";">By 2012, my body began to send itself into allergic reactions for what seemed to be no reason at all. I was unable to maintain my weight on my own and puking was a regular occurrence in my life. Procedures revealed I did not have one of the diagnoses my brother faced. While this was a huge relief, it also left us without any answers as to what was making me sick. Since I didn’t have that diagnosis the doctors told us whatever was making me sick was likely not related to my brother. Little did we know that was anything but true... </span><span style="font-family: "times new roman";">To control the allergic reactions the doctors placed a feeding tube to provide my body with unflavored medical formula made of the most basic nutritional components. Almost immediately, the allergic reactions began to slow. It was such a relief to know that we were making headway in figuring out how to fix me. I knew there were many others, my brother included, who were not as lucky as I was. My beliefs shifted from questioning why this would happen to me towards being thankful I was one who the doctors could help.</span></div>
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<span style="font-family: "times new roman";"><span style="mso-spacerun: yes;"> </span><span style="mso-tab-count: 1;"> </span>I thought I was able to cope with this new normal, but my world fell apart once again when it came as a shock to us that my health was deteriorating. Four months later, the doctors reassured my mom and me by saying they never foresaw my health progressing in the way it had. In a weird way, it made me feel better knowing the doctors were just as blindsided as I was. This time there would be no happy ending. This time it was for real. I could no longer believe that the doctors could fix me. I noticed my beliefs altered as I went through these hills and valleys in my life. I had to learn the hard way that not everything in this world will turn out like you believe it should.<o:p></o:p></span></div>
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<span style="font-family: "times new roman";"><span style="mso-tab-count: 1;"> </span>A few weeks prior to the end of my freshman year of high school, I had another major surgery. Despite the complexity of this surgery, it was believed that I would recover well. Sadly, that never happened. Strangely enough, I ended up in a worse position when I came out of the operating room versus when I went in. Almost immediately, my mother caught on to the physical cues before I had to say a word. My mom already knew what to look for because she had previously seen it in my brother. Over the summer my organs began to shut down. I weighed less than ninety pounds, my immune system was attacking itself, my autonomic nervous system began to fail, and my digestive tract became paralyzed. To say I was falling apart was an understatement.<o:p></o:p></span></div>
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<span style="font-family: "times new roman";"><span style="mso-tab-count: 1;"> </span>I grew up believing the doctors knew all the answers. I quickly learned that belief was anything but true. My parents sought after some of the best doctors across the globe and all of them apologized to my parents because they had nothing to offer us. As if it were any consolation, these doctors told my parents one day they hoped they could save kids like my brother and me, but for now, they didn’t have the funds or tools needed to provide us with treatment options, much less a cure. Our geneticist told my parents and me medical research was not far enough along to help us. We were another family she had to inform of the heartbreaking reality: </span><span style="font-family: "times new roman";">Science wasn’t smart enough yet to save us.</span></div>
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<span style="font-family: "times new roman";"><span style="mso-spacerun: yes;"> </span><span style="mso-tab-count: 1;"> </span>Being the good parent she is my mother would not accept this. Day in and day out she would plead with us to see one more expert across the country, to comply with taking our medication regularly even when it made us sick, to consent to another clinical trial in hopes that we would get a better quality of life. She would tell us to never give up because we don’t know what promising medical breakthroughs were right around the corner. I have never figured out if my mother still believes there is a way to save us out there, but I know it is not easy for her to know that two of their four children will likely die from this disease.<o:p></o:p></span></div>
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<span style="font-family: "times new roman";"><span style="mso-tab-count: 1;"> </span>My mom is the reason I have allowed my beliefs to take on a new form. Without her I would still be beating myself up over the fact that this wasn’t supposed to happen to me. Once I accepted the fact that this happened to me, I was able to stumble upon some newfound growth that has led me to my current beliefs. I came to the realization that no one in the world is able to tell you what is going to happen to you today, tomorrow or the next day. Honestly, if my family had listened to everything the doctors and other healthcare professionals have told us then I would have never been able to walk across the stage at my high school graduation. My little brother, Tyler, would have died before his fifth birthday. I would not be living my days out with a higher purpose to ensure that no teenager, child or adult will ever have to listen to the doctor say, “I am sorry, there is no treatment, no magic pill, no surgery, no chance of remission, and worst of all no cure.”<o:p></o:p></span></div>
Michaela Shelleyhttp://www.blogger.com/profile/08846303698202380222noreply@blogger.com2tag:blogger.com,1999:blog-4197203465945553334.post-75924968583062237732017-09-16T20:57:00.002-04:002017-09-16T20:57:19.313-04:00I Am From Poetry<div style="background-color: white; color: #454545; line-height: normal;">
<span style="font-family: .SFUIDisplay;">These last several months have been pretty earth-shattering in my world, to say the least. I have so many words I want to say to the world but when I come to sit down to write I realize I have none. Life has definitely left me speechless but today I was finally able to let all the stress and worries leave me and just write. If I did anything successful today it would be that, so here it is...</span></div>
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<span style="font-family: ".SFUIDisplay"; font-size: 23pt;">I am from a life where nurses become your best friends and the whirl of IV pumps lull you to sleep.</span></div>
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<span style="font-family: ".SFUIDisplay"; font-size: 23pt;">From a series of never-ending hours in hospital waiting rooms and cold, sterile hallways.</span></div>
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<span style="font-family: ".SFUIDisplay"; font-size: 23pt;">I am from brown eyes that haven't seen far more heartbreak than one could imagine and tear-stained pillows that have received soul-crushing news.</span></div>
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<span style="font-family: ".SFUIDisplay"; font-size: 23pt;">I am from a scared teenage girl whose heart rises each morning in search of a better day.</span></div>
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<span style="font-family: ".SFUIDisplay"; font-size: 23pt;">I am from a belief in which I know I will never fight alone.</span></div>
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<span style="font-family: ".SFUIDisplay"; font-size: 23pt;">From a place where we put all our faith in the Big Man upstairs, from the taste of victory upon finding joy amidst the pain and from a life where laughter cures all.</span></div>
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<span style="font-family: ".SFUIDisplay"; font-size: 23pt;">I am from a kick-ass support team where hope is the only thing that matters and a family who isn't going down without a fight thanks to a Mom who never gives up.</span></div>
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<span style="font-family: ".SFUIDisplay"; font-size: 23pt;">I am from the moments in which I realize the most amazing gift of all is this thing we call life.</span></div>
Michaela Shelleyhttp://www.blogger.com/profile/08846303698202380222noreply@blogger.com0tag:blogger.com,1999:blog-4197203465945553334.post-53760307339463439672017-02-20T18:24:00.002-05:002017-02-20T18:32:30.080-05:00Sisterhood<div class="m_-4461652651383459226p1" style="background-color: white; color: #222222; font-family: arial, sans-serif;">
<span style="color: black; font-family: "times"; text-align: center;"><span style="font-size: large;">"Many places I have been, many sorrows I have seen. But I don't regret, nor will I forget all who took the road with me." - Billy Boyd</span></span><br />
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<span class="m_-4461652651383459226s1">When I was eleven my brother was diagnosed with Mitochondrial Disease. A degenerative, genetic condition that has no treatment. When I was fourteen I was diagnosed with a disease that affects less than 45,000 people worldwide. When I was fifteen I was diagnosed with the same disease that is claiming my younger brother's life.<span class="m_-4461652651383459226Apple-converted-space"> </span></span></div>
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<span class="m_-4461652651383459226s1">Originally, I was lost and scared, but I found my sisterhood among a group of mostly girls connected through social media. We all have different diagnoses, different stages of treatment (If there are any for our specific diagnosis), different locations across the world, but the one thing share is the sense of mutual understanding. There is nothing more special than being present with someone who knows what's wrong before you open your mouth. Even though, I have never met many of these girls in person I have shared more of my fears and worries with them than I have shared with my own parents. They are more than my online friends they are my family.</span></div>
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<span class="m_-4461652651383459226s1">I still remember the nights following my return from traveling the number one specialist for my disease. After two surgeries and several procedures, the doctors walked into my hospital room and told my parents he was sorry but there's not much of anything they can do. He told my parents I would be lucky if I ever got better. In fact, I would probably only get worse. My parents didn't cry and I didn't cry. We were all numb and exhausted. I didn't say a word on the eight-hour drive home, but once we got home I called my best friend, Christine from our close knit group and cried to her until we both fell asleep on the phone together. I was devastated and angry but not for myself. I was devastated for my parents who now had to worry about not just one of their children loosing this uphill battle, but two of them.</span></div>
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<span class="m_-4461652651383459226s1">Christine and all of the other girls have helped me through my darkest moments and cheering me through my greatest accomplishments. I believe that's the most important part of being in a sisterhood: Not only being there when life couldn't be any better but also being there in the darkest of times. Together we cry, we laugh, we pray, we celebrate, we hope, and we dream. We are all deep in the trenches fighting to stay alive, we are scared and suffering yet we still make time to lift each other up. We celebrate the success of the girl who's cancer went into remission while we pray for a miracle of our own. It's about being humble and not make everything about yourself. So many girls have come and gone since I joined this "sisterhood" and I am privileged to be one of the originals still breathing, still living and still fighting. Our lives have been anything but perfect but we have made something beautiful out of the imperfections.</span></div>
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<a href="https://vimeo.com/204964784">Click here</a> to see pictures I have taken with these "Sisters" that I have been blessed to meet in person.<br />
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Michaela Shelleyhttp://www.blogger.com/profile/08846303698202380222noreply@blogger.com0tag:blogger.com,1999:blog-4197203465945553334.post-8498107089018400012017-01-03T18:27:00.002-05:002017-01-03T18:27:27.477-05:00Let Your Children Ask Questions About Me<div class="separator" style="clear: both; text-align: center;">
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While boarding a flight home from Iowa today with my siblings a little girl who couldn't have been much older than four was stopped in front of my seat. She stared at me for a second and very loudly asked her mother "Why does she have to wear that?" [For those who don't know I am immunocompromised and I have to be careful (especially during cold and flu season) to limit the contact I have with germs because my body simply can't fight off the simplest of illnesses. So I often <span class="text_exposed_show" style="display: inline; font-family: inherit;">have to wear a hospital mask in public to filter out the germs in the air I breathe. For me getting sick could very much mean a several day hospital stay. Plus I just got out of the hospital less than two months ago, so I'd rather not go back anytime soon.]</span></div>
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The mother was obviously mortified as most would be, but she was silent when (most parents I have met very quickly shut their child down from asking such questions.) I chose to take the opportunity to speak. Using an age-appropriate description I explained I have a disease that makes it hard for my body to fight off the germs I come in contact with so I have to be super careful and do everything I can to make sure I don't get sick.</div>
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The little girl was satisfied with the answer, the mother was relieved the question didn't make me upset and told the little girl that's exactly why we need to wash our hands often and keep our germs to yourself.</div>
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The point I am trying to make is to let your children ask questions. Don't force your child to be quiet and pretend as those your kids shouldn't know about "people like me." One day maybe your child or your grandchildren could be in my situation. People like to ignore issues simply to pretend as though those problems don't exist because they don't affect your family. Children are only curious and want to learn. Most adults wouldn't dare to ask a similar question for fear of hurting one's feelings. It's time we get comfortable with being uncomfortable.</div>
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Most of those like myself don't mind the questions because it's just another part of our everyday life. As for me and myself, I'd rather other people understand my life because it allows them to be more accepting and empathetic to my situation. It shows those people that I too am a real person just like one of them even though I've been diagnosed with multiple rare diseases. Plus the more people who know about my disease means the more awareness, education, research, and advocacy can be put together so we can be one step closer to a cure!</div>
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Michaela Shelleyhttp://www.blogger.com/profile/08846303698202380222noreply@blogger.com0tag:blogger.com,1999:blog-4197203465945553334.post-45064106623595481162016-12-17T12:02:00.002-05:002016-12-17T12:02:57.417-05:00Just because I'm used to it doesn't mean it hurts any less...I haven't written a post since August...That's the longest I have gone without writing a blog post in a long time. I keep telling myself that I just haven't had the time with my first semester of college starting, (I had my last exam of the semester a few days ago.) but the truth is I have been all over the place emotionally. I have been trying to find some normalcy within all of these new symptoms and frustrations that have come about since the middle of August. My new symptoms coincide with the start of my freshman year of college and the many changes in my life over the last few months have become overwhelming, to say the least. I have been trying to make sense of it all to describe exactly how it feels... So here it goes:<br />
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Just because I'm used to it doesn't mean it hurts any less... - Unknown<br />
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November 16th, 2012. Four years (and one month) have passed since I had a feeding tube shoved up my nose for the very first time. I've spent the last four years of my life fighting a civil war, in which I will never be able to win. As the 1,490 days have piled on so have the diagnoses or battles in the war. Who knew something we thought was so simple could be so much more. To this day I still question how I got here. I didn't expect things to get this bad, but I don't think anyone can imagine "this bad." Most humans don't believe the worst would ever happen to them. I certainly didn't imagine being an 18-year-old who is fighting for her most basic human right: the right to her life. I was supposed to get better, but I never did and I can't tell you how upsetting that has been for me.<br />
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<span style="font-size: x-small;">Oh yeah, I got a tattoo in October.</span></div>
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Many believe that because I've been through these symptoms and treatments once, twice or even a hundred times before that it for some reason makes it okay. They think it is okay because I have gotten used to the worst and that I am now able to handle the struggles in my life. However, I think that's the worst part about it all. The fact that I've had to get used to the unimaginable is what's wrong with the situation. How on earth is it okay for someone to repeatedly spend so much time suffering, while there are very few people who care enough to do something about it? I don't understand it.<br />
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All I know is one morning I woke up thinking I had gotten a virus or infection and thought I would be better in twenty-four hours, but I never got better. The pain and sickness never went away. I have come to find my new normal and how to cope with the pain. I have learned to adapt to the life of a teenager with a chronic illness, but keeping up with everything that role demands is exhausting. There are countless medications I must remember to take, I prepare and begin IV nutrition and IV fluids nightly, and I must take the time to get extra sleep to help my body recover from everyday tasks most normal people wouldn't consider being high energy tasks, but to me feels like a marathon. The pain is still here and it is still just as hard to deal with it today as it was to deal with it on the very first day my symptoms came about. Yes, I may have been through these situations a million times before but they still hurt and it doesn't get easier. Often times, I feel like maybe it is even worse. I'm exhausted, I haven't had a day without feeling sick in more than five years. I have knowledge of what's coming, how much it hurts, how I felt last time this situation happened and how I know I never want to feel that way again. This knowledge makes me dread going through treatments once a month and dread the symptoms I get when my body starts to crash again. I have to push through because if I don't then I don't get to see all of the beautiful things in life and I won't get to accomplish all of the goals I have set for myself.<br />
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Over the years there have been up and downs. I have gotten better and then I got worse again and each time I get worse that is the biggest blow yet. I had hope; Hope that maybe I was actually getting better for once. However, each time I got worse again and again and again... That hope of getting better has been repeatedly taken away from me. I thought I was getting better...But as it turns out that was far from the truth. I often wish that the times I did get better never happened. I wish that I had never gotten my hopes up to let them fall again because all that means is that I have to relive the nightmare of getting sick over and over again.<br />
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I've modified my life each time a blow to my health has come along. I've found what works better and that makes each day just a little bit more survivable, yet that doesn't mean it's not as hard as it once was. Often times, it seems as though I expect things to go wrong. Those things don't surprise me anymore, I always know they are coming just not exactly when they will hit. As I said, I never expected things would get this bad and each time things started to go right I have held out hope thinking I was going to get better until another blow would come along. It's sad to think that I now have to expect something to go wrong in order to better prepare myself for what is ahead.<br />
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Here's the updates:<br />
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Since August there were one too many blows that I didn't expect. First, it started out with a freak reaction to IV Venofer (IV iron) two weeks before my first semester of college started. This caused fluid retention that no one knows how exactly it occurred but even four months later it is still causing problems and I am unable to get my IV nutrition because I can't receive large amounts of fluid without having retention issues. This means I've had to try to increase my ability to eat orally and that was working out at first. I was doing okay for a while minus the increase of nausea and symptoms related to my Dysautonomia due to the lack of fluids.<br />
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The next blow came in the middle of October. Over my fall break, we had a wonderful weekend at the Mitochondrial Disease walk in Charlotte, North Carolina. It was our first year driving up to the walk and we had such a great time! That was on Saturday. Monday I woke up with a rash on my leg. Turns out I had shingles. That was not a fun experience. I was on oral antibiotics for two weeks and IV antivirals for two and a half weeks. For those who don't know antibiotics often slow down gut motility (How well the digestive tract functions.) As we all know my gut function is quite limited so this put a huge damper on the trying to eat all my needed calories orally (or by jejunal tube feeds) side of things. Although, the shingles went away all of the drugs combined with not getting any nutrition made me feel absolutely miserable. I didn't even have a week to recover before my body decided to take an even steeper decline...<br />
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<span style="font-size: x-small;">Charlotte Mito Walk 2016</span></div>
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The day before Halloween like any other Sunday, meaning it is port access day for me. My port was a double lumen port that was only placed back in April after my last central line broke. We were successfully able to access one side, but we were unable to get the other so we decided we would wait until Tuesday night to try again. I had a visit at the cancer center the next morning and it saves time and is much easier if I have both sides accessed before we get there. Well, Tuesday night(November 1st) certainly didn't go as we had planned. After we had finished trying to get my port accessed I became pretty sick. I couldn't stop shaking, I was freezing cold but I already had a low-grade fever, low blood pressure, fast heart rate, I developed a massive migraine and I couldn't stop puking. I hadn't been able to run fluids in several days so I thought I would try that in combination with all my other IV rescue meds. I was able to get a few hours of sleep before waking up still feeling miserable. I made it back to bed and was able to ride it out till my appointment.<br />
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Upon arriving at Hem/Onc I had a fever over 101 and was taken back to isolation. I was so sick and knew something was wrong. I was admitted to the hospital. That was the 2nd of November. Turns out I was in septic shock. Cultures grew in less than twenty-four hours. Which is extremely bad because it typically takes 36-72 hours for cultures to grow bacteria. One of the amazing ICU nurses from the PICC team came by to deaccess and then reaccess my port. The insertion points from where my needles had been leaking pus. She refused to reaccess, (this was the right call) which was probably the best thing. They were able to start an IV and I went back downhill again. Things started moving pretty fast and the doctors came in and said they thought I would need my port removed. Which I already knew my port would have to come out, they didn't have to tell me. I was happy that they made that decision early because if not I would have been in the hospital for several extra days. Thereafter, they got me in for emergency surgery to get my port out. When the surgeon pulled my port there had apparently been a lot of pus and infection surrounding my line that they had to scrape out. They had to leave the incision open to let all the infection get out and it was quite painful. The meds they gave me ended up causing all my labs to be off and caused my blood numbers to drop to half of what's normal. So I got <a href="http://chronicallyawesome23.blogspot.com/2014/06/donate-blood.html">two units of blood</a> (Inserts shameless plug to tell you to donate blood because less than 7% of the world donates blood and if you ask me something is wrong with that!) After that is when things started to turn around for me! By Monday my blood cultures had been negative for over 72 hours and I was able to go into surgery again to get a new central line placed.<br />
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I was discharged Tuesday and was able to vote for the first time that same day! We stopped on the way home from the hospital. I was on antibiotics for two and a half weeks following my hospital stay and these antibiotics also made me very sick. Even more so than the meds I was given in October. I got better for a little while but things haven't been the same since and eating is only continuing to get harder. I haven't had anything substantial to eat since Sunday. It's very frustrating and I feel miserable. All I want is to finally get better but these blows just keep on coming. I know I can make it through all this because I have in the past, but it's still difficult being down in the trenches even if you feel like you know what is ahead. I'm used to feeling miserable all the time, but each day I wake up feeling miserable is another day spent in pain when all I wish is to be feeling something so much more.<br />
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<div style="text-align: center;">
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School wise things are going great! I've made some wonderful friends over this last semester! I was able to get caught up in all my classes fairly quickly from while I was in the hospital and I ended the semester with great grades. I got a 97 on my biology final and I was super happy about that. I am very happy that finals week is over and I can now relax and enjoy this break over Christmas. There's only a week till Christmas Eve and I am so ready for all of the festivities to begin! We will be flying to see our Dad in Iowa the day after Christmas so we will be in the midst of the holiday travel! We hope for smooth travel days and snow because living in the south we don't get to experience that very often.</div>
Michaela Shelleyhttp://www.blogger.com/profile/08846303698202380222noreply@blogger.com1tag:blogger.com,1999:blog-4197203465945553334.post-12560237872377179062016-08-10T17:01:00.000-04:002016-08-10T17:03:22.241-04:00To The Teenager Recently Diagnosed With a Chronic Illness<div class="MsoNormal">
<div class="separator" style="clear: both; text-align: center;">
<a href="https://4.bp.blogspot.com/-K5i2za96de8/V6uWkBIeBtI/AAAAAAAABTY/Eki9wuRLrkkcK5u75w83RerdJwlLX9n4wCLcB/s1600/MichaelaS_Pills.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="https://4.bp.blogspot.com/-K5i2za96de8/V6uWkBIeBtI/AAAAAAAABTY/Eki9wuRLrkkcK5u75w83RerdJwlLX9n4wCLcB/s320/MichaelaS_Pills.jpg" width="320" /></a></div>
<span style="font-size: 16.0pt; mso-bidi-font-size: 12.0pt;"><br /></span>
<span style="font-size: 16.0pt; mso-bidi-font-size: 12.0pt;">To The
Teenager Recently Diagnosed With a Chronic Illness,<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: 16.0pt; mso-bidi-font-size: 12.0pt;"><span style="mso-tab-count: 1;"> </span>I know it was quite a shock to you,
having been thrown into the world of chronic illnesses. I bet the first day you
woke up sick it never crossed your mind that you wouldn’t get better, but soon days,
weeks and months went by and your health never changed. It seemed like you
would never get well again.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: 16.0pt; mso-bidi-font-size: 12.0pt;"><span style="mso-tab-count: 1;"> </span>You probably went from doctor to doctor
to try to figure out what was causing havoc inside your body. If it was
anything like my fight, you spent months trying to find a diagnosis. Suddenly
your days will be consumed with hospital stays, doctor’s appointments, medications
and procedures. However, don’t let this become your life because it’s not your
life.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: 16.0pt; mso-bidi-font-size: 12.0pt;"><span style="mso-tab-count: 1;"> </span>Cherish the days when you get to enjoy
your teenage years. Take the opportunity when given to go out and enjoy the
typical teenage milestones such as Friday night football games, high school,
prom and parties. You won’t get to experience many of these events again. These
are going to be the days that help you carry on this fight. When you’re at your
worst and it seems like nothing will ever get better, you’ll want to remember the
times when life was at it’s highest because those days will show you life does
get better.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: 16.0pt; mso-bidi-font-size: 12.0pt;"><span style="mso-tab-count: 1;"> </span>Amidst the failed treatments, painful
procedures and hopeless nights you’ll find that this rose surely has its
thorns, but it also has its beauty and you can’t let the thorns of this life
distract you from the beauty lying within it. No matter what type of chronic
illness you are facing ,this fight will be difficult beyond compare. There will
be days when the symptoms plaguing your body will be too hard to bare but I
want you to know you aren’t alone. <span style="mso-spacerun: yes;"> </span>Many
other teenagers out there in the world, including myself, are facing the same
struggles.<span style="mso-spacerun: yes;"> </span>I know just how hard it can
having to fight your own body like it’s a civil war, but I know you will be
able to do this. I believe in you.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: 16.0pt; mso-bidi-font-size: 12.0pt;">From,<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: 16.0pt; mso-bidi-font-size: 12.0pt;">Michaela
Shelley<o:p></o:p></span></div>
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<div class="MsoNormal">
<span style="font-size: 16.0pt; mso-bidi-font-size: 12.0pt;">A
Chronically Ill Teenager<o:p></o:p></span></div>
Michaela Shelleyhttp://www.blogger.com/profile/08846303698202380222noreply@blogger.com1tag:blogger.com,1999:blog-4197203465945553334.post-34009619177604057812016-06-09T20:53:00.000-04:002016-06-09T20:53:31.240-04:00What If It Were You?<div class="MsoNormal">
What if it were you scouring the Internet?<o:p></o:p></div>
<div class="MsoNormal">
A search for the mystery inside your broken body<o:p></o:p></div>
<div class="MsoNormal">
An answer to the aches and pain<o:p></o:p></div>
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A type of pain that Band-Aids and kisses couldn’t fix<o:p></o:p></div>
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<br /></div>
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What if it were you who knew something was wrong<o:p></o:p></div>
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But not even the doctors were sure<o:p></o:p></div>
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If they didn’t have an answer who would?<o:p></o:p></div>
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Did they even believe this pain was true?<o:p></o:p></div>
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<br /></div>
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What if it was you fighting for your most basic right?<o:p></o:p></div>
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The right to life<o:p></o:p></div>
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Is that even fair?<o:p></o:p></div>
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Truth is nothing ever is<o:p></o:p></div>
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<br /></div>
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What if it were you enduring the unimaginable?<o:p></o:p></div>
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Endless pain, Numberless needle pokes<o:p></o:p></div>
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Helpless doctors, Countless procedures<o:p></o:p></div>
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All while being defenseless against your own body<o:p></o:p></div>
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<br /></div>
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What if it were you crying,<o:p></o:p></div>
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Fighting,<o:p></o:p></div>
<div class="MsoNormal">
Dying,<o:p></o:p></div>
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Trying to remain above water.<o:p></o:p></div>
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<br /></div>
<div class="MsoNormal">
Could you do it?<o:p></o:p></div>
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Just for a moment,<o:p></o:p></div>
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Try to picture it being you. <o:p></o:p></div>
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<div class="MsoNormal">
Try to picture being me.<o:p></o:p></div>
Michaela Shelleyhttp://www.blogger.com/profile/08846303698202380222noreply@blogger.com3tag:blogger.com,1999:blog-4197203465945553334.post-21913649982545980282016-06-06T14:16:00.001-04:002016-06-06T14:16:06.146-04:00Prom, Hospitals & High School GraduationAlmost a week and a half ago (May 26th) I was able to walk across the stage an receive my diploma! This was a huge accomplishment no one was sure I would be able to make happen but it did and I am so happy for that!<br />
The story is fairly long and complicated but it goes like this...<br />
My Hickman line broke on April 18th. We weren't entirely surprised this happened because I had that current line placed for more than a year and a half! We knew it would break eventually we just didn't expect it to be then. We called the surgery team who asked we go down to the ER to be evaluated. They told us my line could be fixed but we knew with the type of line I had it was not repairable. That's the bad thing about having a Power Hickman line. In the ER we dealt with a resident who wasn't the brightest man in the world. He said well it's broken but it's not THAT bad... He said I wouldn't need surgery and as long as I used alcohol wipes it wouldn't be an infection risk. To which I freaked out and asked for my surgeon to come down. Finally my surgeon got there and said I did need surgery to get it replaced. However, they couldn't get surgery scheduled until a week later! One side of my line worked to run TPN but the other was broken and couldn't be used. So we had to make do until then. The night of surgery I spiked a very high fever. However, upon arriving for surgery I didn't have a fever so they continued with the surgery as planned. I had a double port placed and went home immediately.<br />
I was able to attend my Senior Prom which was only a few days after surgery. Although my chest was bruised and I didn't feel the greatest I was able to enjoy and awesome night with friends!<br />
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<a href="https://1.bp.blogspot.com/-S_GSB2Lzdok/V1W6N2GL-xI/AAAAAAAABP4/TWWR1PLNWDgEq5lxwUXRvqTtdTdP4vyigCLcB/s1600/Prom2016-0036.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="https://1.bp.blogspot.com/-S_GSB2Lzdok/V1W6N2GL-xI/AAAAAAAABP4/TWWR1PLNWDgEq5lxwUXRvqTtdTdP4vyigCLcB/s320/Prom2016-0036.jpg" width="320" /></a></div>
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Michaela (me), Amy (mom), Kiley (sister)</div>
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<a href="https://4.bp.blogspot.com/-mJDq97pCCKo/V1W6O3hk5mI/AAAAAAAABQA/bNbiZCqRTwYKjdW3RqEZ3yh4dXt94Y1eACLcB/s1600/Prom2016-0039.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="https://4.bp.blogspot.com/-mJDq97pCCKo/V1W6O3hk5mI/AAAAAAAABQA/bNbiZCqRTwYKjdW3RqEZ3yh4dXt94Y1eACLcB/s320/Prom2016-0039.jpg" width="320" /></a></div>
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Kiley, Carson, Michaela (me), Emiley</div>
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Just a few days later the surgery team called and said the Hickman line that was removed had grown gram negative bacteria. I was placed on oral antibiotics and that was supposed to be the end of that. However, as I began to finish antibiotics I started developing low grade fevers and began to feel unwell again.<br />
<br />
I woke up around three am on Sunday, May 22nd and I wasn't feeling quite right. Worse than I had been feeling all along. I had a horrible migraine and my body ached all over. That feeling is typical for only being a few days post- IVIG treatment.I already had all the meds I could get so I tried to get back to sleep but it just wasn't happening. I got up out of bed and decided to take my temperature just to see if there was something going on even though I didn't feel like I had a fever. Well sure enough I had a fever of 101.2 which meant I needed to get to the hospital. We finally got there around six in the morning. Cultures and other blood work was drawn so we were going to wait and see what came back. Most of my blood work looked okay. However, I was not doing well. My blood pressure kept dropping more and more each time they took it until it got down to 89/33. That's when they became very concerned. I got extra IV fluids and was admitted to the hospital.<br />
<br />
Although my blood work looked okay I continued to fall into the path of very low blood pressures, exhaustion, and pain as we waited for cultures to come back. Surely enough at the 48 hour mark my blood cultures had grown gram positive rods which meant I had an infection in my port. This time it was an entirely different infection than what I had before! I was upset and angry but we continued to push on hoping I would be out of the hospital by graduation. I was feeling a little bit better but there was still so many issues with my blood pressure that no one could figure out. It was starting to come up a little bit but it still wasn't great.<br />
<br />
My hospital is unable to give a day pass to allow the patient to leave the hospital for a few hours so if I was going to graduation I had to be discharged completely. The night before graduation no one was sure I would be able to make it but I reluctantly asked to leave the hospital so I could go walk across that stage just like all of my friends.<br />
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Child Life had a nice surprise for me when I left.</div>
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Although I felt horrible I was let go on IV antibiotics and some extra medication to help me get along. We ran out of the hospital real quick as I was only discharged a little less than four hours prior to the time I needed to be at graduation. However, we made it and I was so excited! After everything I have been through I was able to walk across that stage and close all of the struggles and heartbreak I have been through over the last four years. I worked extremely hard trying to complete make up work, coming in before school and staying late to receive extra help from teachers for my missed work, the extra hours spent with my homebound teachers, and just trying to make it out of bed to school in the morning even when I felt way too sick.</div>
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I did it!! I will be off to Converse College in the fall of 2016.</div>
Michaela Shelleyhttp://www.blogger.com/profile/08846303698202380222noreply@blogger.com2tag:blogger.com,1999:blog-4197203465945553334.post-77117091723054477932016-05-18T17:02:00.000-04:002016-05-18T17:02:01.461-04:00How My Illness Has Made Me Grow Into Something Greater<span style="background-color: white; color: #373e4d; font-family: "helvetica" , "arial" , sans-serif; font-size: 14px; line-height: 18px; white-space: pre-wrap;">I'm currently writing a scholarship essay on how I have grown as an individual throughout my last four years of high school. There are so many mixed emotions going through my head, as I think about the last four years of my life. I decided to sit down and re-read the blogposts I have written throughout these last few years. As I have started to look over these posts I am slowly beginning to process what I have been through over these last several years.</span><br />
<br />
<span style="background-color: white; color: #373e4d; font-family: "helvetica" , "arial" , sans-serif; font-size: 14px; line-height: 18px; white-space: pre-wrap;">Having this blog has been one of the best decisions I've made in my life. I am very thankful for the person who encouraged me to pursue this avenue because I realize I have a story to tell. When I started my blog I didn't share the link with too many people. Only a handful of people, even knew the blog existed in the first place. I don't think my parents had the link for a while! For about a year and a half I kept like this, until one day I slowly started posting links onto Facebook. <a href="http://chronicallyawesome23.blogspot.com/2014/07/you-can-stare-and-i-dont-care.html">I shared a post</a> that picked up quite a bit of attention, because of that, I allowed myself to become more vulnerable when it came to uncovering the truths I've kept secret.</span><br />
<span style="background-color: white; color: #373e4d; font-family: "helvetica" , "arial" , sans-serif; font-size: 14px; line-height: 18px; white-space: pre-wrap;"><br /></span>
<span style="background-color: white; color: #373e4d; font-family: "helvetica" , "arial" , sans-serif; font-size: 14px; line-height: 18px; white-space: pre-wrap;">I was only eleven when all of my health issues became increasingly prominent in my life. For the longest time we couldn't figure out what was wrong with me. By the time of my freshman year rolled around I had a feeding tube shoved up my nose. During my sophomore year, my entire digestive tract had shutdown and became clinically diagnosed with <a href="http://www.umdf.org/site/c.8qKOJ0MvF7LUG/b.7934627/k.3711/What_is_Mitochondrial_Disease.htm">Mitochondrial Disease</a>. </span><span style="background-color: white; color: #373e4d; font-family: "helvetica" , "arial" , sans-serif; font-size: 14px; line-height: 18px; white-space: pre-wrap;">My life was completely altered and everything I had shattered into a million and one pieces. Like a puzzle I had to learn how to pick up the pieces and put everything I had back together. As I began to put my life back in order, I also began to write more frequently. When I read those words I once wrote shows me how quickly I had to grow up. I had to make a decision as to, whether or not I was going to let the life I must live defeat me.</span><br />
<span style="background-color: white; color: #373e4d; font-family: "helvetica" , "arial" , sans-serif; font-size: 14px; line-height: 18px; white-space: pre-wrap;"><br /></span><span style="background-color: white; color: #373e4d; font-family: "helvetica" , "arial" , sans-serif; font-size: 14px; line-height: 18px; white-space: pre-wrap;">As you can tell I decided that the life that was forced upon me was something I could overcome. It took some time but I have found my happy place in writing. </span><span style="background-color: white; color: #373e4d; font-family: helvetica, arial, sans-serif; font-size: 14px; line-height: 18px; white-space: pre-wrap;">I'm no longer that scared fourteen year old girl anymore. Some how I found a voice even when I couldn't find the words to speak about how I felt. The essay I have written for the scholarship is down below. It took me a while but I found a way to share with the world that my life has taken so many twists and turns, and how I was able to grow out of my situation.</span><br />
<span style="background-color: white; color: #373e4d; font-family: "helvetica" , "arial" , sans-serif; font-size: 14px; line-height: 18px; white-space: pre-wrap;"><br /></span>
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<span style="background-color: white; color: #373e4d; font-family: "helvetica" , "arial" , sans-serif; font-size: 14px; line-height: 18px; white-space: pre-wrap;">Essay below:</span><br />
<span style="background-color: white; color: #373e4d; font-family: "helvetica" , "arial" , sans-serif; font-size: 14px; line-height: 18px; white-space: pre-wrap;">
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<span style="font-family: "times new roman";"> I have never been able to fully
comprehend why my body has chosen to stage a civil war. It has become an uphill
battle in a war I will never be able to win. How can anyone win a war against
his or her own body? When the war first started I was a scared fourteen-year-old
little girl who went from a life of high school, soccer, and friends to a life
of surgeries, pills, and doctors. Almost four years ago the fight for my life
began and this fight has changed me in more ways than I could have ever
imagined. My body might be growing weaker but this passion for advocacy and
awareness is only growing stronger.</span></div>
<div class="MsoNormal" style="line-height: 200%;">
<span style="font-family: "times new roman";"> My health declined in my freshman
year of high school and I had a feeding tube placed because my body was no
longer able to tolerate the food I ate. Imagine not being able to eat
Thanksgiving dinner or even your own birthday cake… During this time I
struggled greatly as I adapted to my new lifestyle. I was shy about my disease mainly
because I felt that if nobody talked about it then maybe I could pretend like
it didn’t even exist. It worked for a little while and I felt normal but as my
health progressed things were no longer as easy to hide as they used to be.</span></div>
<div class="MsoNormal" style="line-height: 200%;">
<span style="font-family: "times new roman";"> The doctors didn’t believe my
condition would progress as it did with my brother, but it did. The war raged
on in my body and it was time for another battle. For months I struggled both
physically and emotionally. I was diagnosed with Mitochondrial Disease like my
brother. Mitochondrial Disease is a degenerative condition that has no
treatment or cure. I became scared thinking about the struggles my brother
faces, knowing I too would be following that same line. This wasn’t supposed to
happen.</span></div>
<div class="MsoNormal" style="line-height: 200%;">
<span style="font-family: "times new roman";"> Prior to my diagnosis I spent many
hours volunteering for a cure to save my brother, but it became different when
it was myself. It became more personal, so I chose to become a voice for
teenagers with chronic illnesses. I know what life is like for sick teenagers
and when I noticed there wasn’t anyone who was speaking out on our behalf, I
wanted to be that person.</span></div>
<div class="MsoNormal" style="line-height: 200%;">
<span style="font-family: "times new roman";"> I started a blog
(ChronicallyAwesome23.blogspot.com) to share my story during ninth grade. With
this blog my friends began to understand the daily challenges of my life. At
this time I also began speaking engagements, lobbied at the State House, and started
spending time connecting with others teens like myself.</span></div>
<div class="MsoNormal" style="line-height: 200%;">
<span style="font-family: "times new roman";"> Shortly thereafter in March of 2015,
a post I had written for a special needs forum changed my life, when Huffington
Post contacted me to be featured on their website. Since then I’ve written
eight pieces for their website and have connected with other newspapers both
international and domestic.</span></div>
<div class="MsoNormal" style="line-height: 200%;">
<span style="font-family: "times new roman";"> When I first got sick I was closed
off, but I’ve learned to be open and outgoing, as I’ve become comfortable with
my illness. I want to continue my work with my advocacy efforts and hope to
pursue my passion for a career in journalism to continue to share the stories
of others and myself. If you asked me today who I was in ninth grade I don’t
think I would be able to recognize myself. These last four years have changed
me for the greater good and I couldn’t be any more proud of the person I have
become.</span></div>
Michaela Shelleyhttp://www.blogger.com/profile/08846303698202380222noreply@blogger.com1tag:blogger.com,1999:blog-4197203465945553334.post-59681849890537063622016-02-26T20:53:00.001-05:002016-04-16T20:23:25.497-04:00The Color Green<div class="MsoNormal" style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 12.8px;">
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diagnosed with Mitochondrial Disease. The color green became a symbol for the
fight to find a cure. I soon realized just how important a cure was for my
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that Spring Saturday in April my youngest brother, Tyler had a seizure in my
arms. I was only twelve. I remember screaming for help, thinking that this was
all my fault, and the worst of it all was seeing my nine year old brother,
Brycen see his brother being carried out the door seizing. Brycen had never
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survived the night, but he was unconscious laying in a bed in the Pediatric
Intensive Care Unit. His little five-year-old body received a beating. Tyler turned
blue within minutes of my parents rushing him out of the house. We didn’t call
an ambulance because at the time of his first seizure it took well over an hour
for an ambulance to reach our house. Tyler didn’t have that time. He began to
turn blue within a matter of minutes after he had left our house. My parents
were able to receive help at the fire station but that poor boy continued to
seize. He spent over two hours seizing on that night. Tyler spent the next
twenty-four hours unconscious, but he pulled through without any lasting
effects from the seizure.<o:p></o:p></span></div>
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<a href="https://2.bp.blogspot.com/-l4w7oh4Id1c/VtDzSSJjhaI/AAAAAAAABLM/PbIJ5ycIQ3o/s1600/242040_188111734574267_3752880_o.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://2.bp.blogspot.com/-l4w7oh4Id1c/VtDzSSJjhaI/AAAAAAAABLM/PbIJ5ycIQ3o/s320/242040_188111734574267_3752880_o.jpg" width="240"></a></div>
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A picture of Tyler and I taken on New Years Eve 2010</div>
<div class="separator" style="clear: both; text-align: center;">
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<span style="background-color: rgba(255, 255, 255, 0);"> </span><span style="font-family: Arial; font-size: 11pt; text-indent: 45pt;">The
next week Tyler was diagnosed with Mitochondrial Disease. Mitochondrial disease
is a degenerative and terminal, genetic disorder. I cried. Our family knew a little
boy with Mitochondrial Disease. His name was Zach and although Zach was only
three he was so sick. He passed away two months after my brother was diagnosed.</span><br>
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<!--StartFragment-->
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my life began to change even more. It happened so fast and I lost all control. <span style="mso-spacerun: yes;"> </span>The perfect happy life I once had no longer
existed. It was like my life was sucked up into a tornado, spit back out again,
and shattered into a million and one pieces. I too became sick. The first time
it happened, I had to stop eating all food. Yes, all food! Imagine living a
life without Halloween candy, Christmas cookies, Easter eggs, and even your own
birthday cake! I received a feeding tube. I got better, I was so thankful. I
thought maybe this was it. I knew I could manage this. It was not even close to
compare to what my brother goes through everyday. I was okay. I found my new
normal, although life was anything but normal.<o:p></o:p></span></div>
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<a href="https://3.bp.blogspot.com/-O0fZ0EhPgB0/VtD3u1G-HaI/AAAAAAAABLk/Tuy3eI3pKJc/s1600/178304_4081546035048_1823784993_o.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://3.bp.blogspot.com/-O0fZ0EhPgB0/VtD3u1G-HaI/AAAAAAAABLk/Tuy3eI3pKJc/s320/178304_4081546035048_1823784993_o.jpg" width="240"></a></div>
<div class="separator" style="clear: both; text-align: center;">
June 2012</div>
<div class="separator" style="clear: both; text-align: center;">
<br></div>
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months after I put my life back together it shattered again. The catch was this
time it would be so much worse. My feeding tube was no longer working. Everyone
told me this would never happen! They never believed I would wind up in the same
position as my brother has. I cried and cried. The strain mentally was almost
as bad as it was physically. I knew what all this meant. I already knew what I
would soon be facing, because I’ve seen my brother face this fight. I think that
was the worst part, knowing what was before me. That little fifteen year old me
was so scared.<o:p></o:p></span></div>
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<div class="separator" style="clear: both; text-align: center;">
September 2013</div>
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a few months later Mitochondrial Disease stormed its way into my life, again.
However, this time it was pertaining to myself not my brother. It became
official. The top pediatric specialist who treats one of my diseases told me I
would never get better and even if I did I would still be very sick and rely on
tubes to keep me alive. How can doctors tell a person there’s nothing they can
do to make things okay again? Like dominos in a domino line my organs have
started to fall down and fail one by one. Organs failing right in front of your
eyes and there’s nothing you can do about it. No treatment, No radiation, No
chance of remission, No surgery, No magic pill, and worst of all No cure.<o:p></o:p></span></div>
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here I am two years later still breathing, still living, and still fighting.
I’ve rebuilt my life to the best of my abilities. I have chosen to live my life
just as any other person would because, just like you I don’t know what tomorrow
will bring. Maybe not today, but maybe five years from now what if the doctors
were able to find a cure and they would be able to fix me? If they had a cure I
would be able to have a whole future ahead of me and that’s a lot to think
about.<o:p></o:p></span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-zvcCPPBT4uY/VtEBbL-nL1I/AAAAAAAABMM/qo1g1MBVUNM/s1600/MichaelaS_Mask-0010.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="https://1.bp.blogspot.com/-zvcCPPBT4uY/VtEBbL-nL1I/AAAAAAAABMM/qo1g1MBVUNM/s320/MichaelaS_Mask-0010.jpg" width="320"></a></div>
<div style="text-align: center;">
<span style="background-color: rgba(255, 255, 255, 0);">February 2016</span></div>
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I set out to find a cure to save my brother I never expected I would have all
these opportunities available to help me do so. I’m still out there searching
and fighting for a cure. It’s not only about my brother anymore. It’s about the
child who is born every fifteen minutes who will develop Mitochondrial Disease
by age ten, the child who lost their sister or brother to the disease, the
parents who are struggling to find a diagnosis for their child, the mom who is
unable to take care of her four children because she is too ill, the teenager
who is fighting to make it through high school despite their illness, and
anyone who is still pursuing their dreams even though their body is failing
them.<o:p></o:p></span></div>
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<!--EndFragment--><br>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in; margin-left: -9.0pt; margin-right: -9.0pt; margin-top: 0in; text-indent: 45.0pt;">
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color green isn’t so bad anymore. It is now one of my favorite colors next to
blue, of course. Mitochondrial disease has become a blessing and a curse.
Without Mitochondrial Disease I would have never had some of these amazing
experiences I’ve been gifted with, but I also see it as a curse as I see both
mine and my brother’s bodies slowly shutdown on us. My life may not ever have a
happy ending but it’s not about the happy ending it’s about the story and if
you ask me I think it’s a damn good story.<o:p></o:p></span></div>
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<div class="separator" style="clear: both; text-align: center;">
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Michaela Shelleyhttp://www.blogger.com/profile/08846303698202380222noreply@blogger.com1