7 Weeks

     It has been 7 weeks since I fell ill and a few people have asked how I am doing. Over the course of the past 7 weeks a lot has happened. I've seen many doctors, I've had blood tests done, and I've had medication adjusted more than once. I am not the same person I was before I took Levaquin, but I am strong. I've taken 5 sick days, I've quit my after school job, I've seen the doctor 3 times, my blood has been drawn 3 times, and I've had 2 EKG's, and 2 medication changes. I will win this battle against Levaquin. 

     I have seen a doctor more 3 times more than I would like to admit in the past 7 weeks. During the first appointment to see the doctor for what felt like death, the doctor did and EKG and some blood work. The doctor assured me that I was fine and that I probably had a virus of some sort. During this visit the EKG was normal and the blood work was not. At this time, I had severe anxiety, a low grade fever (99 or 100.4)  that depended on which ear you checked. I also had episodes of hot flashes with sweating. The blood work showed me as having a CO2 level of 21mmol/L when the normal range is 22-32 mmol/L. My AST was 49 U/L when it should have been between 10-35 U/L. Lastly my ALT was 94 U/L when it should be between 10-35 U/L. This blood work was collected on 10/11/18. 

    After a week of dealing with what the PA thought was a virus, I continued to feel the same: severe anxiety, sweaty hot flashes, muscle tension, and jerkiness. We decided to see the doctor again. At this appointment which occurred on October 20th, the doctor suspected that I was suffering from Mono or Hepatitis. All Mono tests came back normal and my liver enzymes still looked high, but had come down. At this point everything looked normal except for a high AST of 88 U/L. The doc wanted a follow up set for 4 weeks. 

     On the night of November 2nd or the early morning hours of November 3rd, I woke up in bed with what felt like my heart pounding out of my chest as my heart was racing. We immediately contacted my PCP at this time who asked me to set up an appointment with a doc for a holter monitor. On Saturday November 4th, the doctor placed a Zico patch on me and informed me that I may have a heart arrhythmia. At this point in time it is being determined whether or not I have Paroxysmal Atrial Tachycardia which means that my heart may have an extra fiber. I have since found out that Levaquin can cause long QT intervals of the heart which can cause cardiac arrest if not resolved in time. If I have a heart arrythmia, a surgical procedure is imminent. 

      Yesterday, I had a follow up blood test done. My AST is still abnormal, but I have made it down to 54 mmol/L. I occasionally have the hot flashes. I have heart palpitations or pounding at night.  I have stopped taking my birth control and my mood seems to be manageable. I see the doctor on Tuesday. I am currently continuing to work full-time. 

Invisible

      The past month of my life has been an absolute nightmare and it has taken until tonight for me to actually right down what has happened. Sometime towards the end of September, I came down with your average cold: sore throat and cough. Over the following days, it seemed as though I could not kick the cold. It turned into Bronchitis, my mom kept me home from work, and we went to see the doctor. What happened next, is something that I wish on absolutely no one.
     On Wednesday October 3rd, I was prescribed Levaquin for what we thought was Bronchitis and possibly a UTI. I took my first dose of my antibiotic that night. I took the following day off of work and continued to take the antibiotic. Right after taking this medication on Friday October 5th, we headed up to Homecoming at Penn College. It was my first trip staying away from home, in a hotel, without my mom. As we traveled to Williamsport, I realized that my anxiety was increasing and my stomach was not feeling well. I typically have anxiety when I travel. The anxiety bothered me, but no more than expected.
      Friday evening, I enjoyed time with old college friends, ate buffalo chicken dip, and called it a night. When I returned to the hotel, I got cuddled up in my pajamas, cuddled up in bed, and I tried to fall asleep. I soon realized that I was unable to relax myself enough to fall asleep and my heart began to race. Over the course of that night, I had 2 panic attacks and I thought I was going to die.
       Saturday morning, I woke my father up around 6 because I felt like I couldn't function or stay alive without him. My father grabbed breakfast and I begged to head home despite the fact that there for several fun things to do that day. Upon arriving home, I couldn't do much more than move. My mother arrived home from a retreat and took me to see a doctor who reassured me that the medications I was on were fine and that my heart was fine.
       On Monday October 8th, my mother contacted my Psychiatrist to see if he had any idea what was going on. He gave me a call later that day to share the news that there was absolutely nothing wrong with me or the Levaquin. He told me to keep taking my antibiotic and that it may just be messing with my anti-anxiety medication. He told me to give it 2-3 days to get out of my system and that I would be just fine. That Monday, I took the last dose of the medication I will ever take, despite the fact that I had one more dose to take.
      On Thursday October 11th, I felt as though there was no way that I could function and go to work. With no ability to go to work and function, my mother took me in to see the doctor again. At the office, they performed an EKG (normal), and some blood work that came back a little abnormal, but nothing too worrisome. The doctor informed me that I just had a virus and felt miserable, despite the fact that I still felt like I was dying and felt as though I couldn't think straight.
     I went back to work on Monday October 15th as I had no choice. I have already used half of my sick days for the entire school year. I went to work all week. Wednesday October 17th turned out okay and I thought I was on the mend. Thursday October 18th everything got bad again, but I had, had a CPR/First Aid training which could've increased my anxiety. By Saturday October 20th, my mother felt the need to take me to see a doctor again to get to the bottom of everything. More blood work was run and everything came back the same, if not a smudge better. The anxiety and stomach upset that I have had over the past 3 weeks has been terrible.
      Last week, I finally informed my boss that I needed to stop doing the 2nd part of my job. I am no longer working for our after-school program. As I was working with a student today, I ran into one of my supervisors in the hall. She knows that I am not well and knows that I can't do after school anymore. The problem I sit hear with now is realizing that I probably looked great to my supervisor today, but the reality is that on the inside I'm suffering. Today was a great day too, but that doesn't mean that tomorrow will be. I plan on going to bed tonight and waking up perfect, but I realize that may not be the case. I struggle with this dilemma all time. I feel like others couldn't believe what I am saying based on how I look on the outside. The reality is that I am sick. I may not be coughing sick, but I am mentally not well and I have a virus. I don't like having something that looks so invisible to the naked eye. I don't like to upset others. I want the best for everyone and I try my best. I never want someone to think I am a wimp or think that I'm giving up too easily. I know no one is upset, but it must be so hard to understand something that is invisible. Please understand that I am suffering. Today was great, but tomorrow could be different. I will let the world know when I am well. Never take Levaquin!!!
   
   

The World

     Do you ever just feel mad at the world? Are you ever mad for no apparent reason? Well, sometimes I'm just mad at the world. There is nothing I'm mad about, yet I'm mad about everything at the same time. I know, it's confusing. I currently feel as if my world is being turned upside down, but nothing bad has happened. What has happened, is change. Aspies do not do well with change. A lot of change, but all good change. I think part of the reason it's so hard is that the changes are things that I'm not used to.
  Today I went to physical therapy. I really enjoy going to physical therapy because I always feel better when I leave. My PT is also great, understanding, and just gets me for who I am. She doesn't treat me any differently and she doesn't act like I'm weird. She's funny and she treats me just like anyone else. You'd be surprised, but it's pretty hard to find people like that. I've gotten so good at it that I'm normally able to tell if you're going to be my buddy the first time I meet you. Not that I wouldn't kill you with kindness or not, but I may have to work a little harder to interact with you then just being "myself".
   As I stepped into the physical therapy office, I heard someone say hello to me. I was surprised that someone behind the reception desk knew who I was. Well, it was my PT. She stood and talked for a couple of minutes and then she unfortunately informed me that I wouldn't be working with her tonight. CHANGE!!! Did I mention how much I hate change and how much I love consistency.
     I'm also not used to living on my own, which will eventually be another change. Let's be honest! I went to college and I lived in a dorm. When I lived in the dorm, I was fed meals, everything was in walking distance, and my RA was practically like my parent. Wait, I forgot to mention, my parents were also only a phone call away.
       Next week, I'm going to be living alone.....for a week. My parents are flying across the country to a conference. I will be working full-time and I'll actually have to come home and cook myself dinner and clean up after myself! Gasp!!!! Needless to say, I'm overwhelmed. I'm worried about rides and if my rides will get me places on times. I'm worried about cooking meals and not burning the house down. Honestly, I'm worried that my parents are going to come home to a complete disaster. I definitely don't want that to happen.
      While I don't want the house to be a complete disaster, keeping it clean is much easier said than done. You know, because this chic doesn't have very good executive functioning skills. I can't keep my own room clean let alone a whole house. Give me a bunch of storage containers and lids and I about flip out because I don't know where to begin. God only knows how I made it through college with all the tests and projects. That being said, I'm also quite organized when it comes to checking things off a list. If someone emails me, I email them right back as soon as I can. Some people don't seem as organized as they could be. While individuals who have autism are not always organized, they like the rest of the world to be extra organized. While change and organization are hard it's also hard to learn something that you basically had to unlearn.
      While I refuse to go into detail tonight, I had to learn to speak up for myself and understand that I would be heard. Let me makes this straight. I know how to advocate for my needs, but I don't always know how to speak up for myself when something is wrong. Why? Well, when I was in high school other things happened that once again I will not discuss in length. During this strenuous time in high school, I learned that if I spoke up, I would just be told to stay silent and that I was misinterpreting things. If I wasn't told this, I was basically told that not a whole lot could be done.
      On Friday when I even hinted at speaking up for myself, someone actually listened to me. I was so in shock that someone actually took my word for something instead of throwing it to the side as just another thing that Simply J misunderstood. Someone ACTUALLY LISTENED and took action. When action was taken, I was so in shock that tonight I sit here with questions that have yet to be answered. While questions have not been answered, there really is no way to answer them, but to wait. Patience!!!! I'm not very good at patience either!!!
    So I'm mad at the world! I'm mad at the world because the world doesn't always make sense to me. The world makes me anxious and at times can be very illogical. Being illogical doesn't make sense, but tomorrow is going to be a new day and this girl is going to kick ass!!!
   

Pain

     I started Physical Therapy (PT) on Monday for chronic neck and back pain that hasn't gone away since I stopped wearing my backpack. As I explained to my mother how excited I was to feel better, she reminded me to thoroughly answer the questions that the Physical Therapist asked. I thought to myself about how easy that was and that it couldn't be too difficult. When I finally met with PT, I realized just how hard those questions were to answer and just how subjective pain is.
     During my time in OT school, the therapists that shadowed would always ask their patients what their level of pain was on a scale of 1-10. A lot of the time patients would say that their pain was somewhere between 7-9. I truly couldn't imagine how much paint these individuals were in. It scared me to age. I also couldn't ever understand how they could even gauge that.
      Fast forward to Monday where I was asked similar questions. The first questions was, "where is your pain"? Well of course the paint is in my neck, shoulder, and back. If I had to give a rough estimate, I would say the upper left quadrant of my back. That question was easy.
      Then came the questions about my pain level. "On a scale of 1-10, how bad is your pain?" I thought to myself and shared with my therapist that it was probably about a 1 or 2. I thought the questions were done. Then she asked, "On a scale of 1-10, how bad has the pain been at its worst"? I took a minute to think again and then I told her it was probably a 3-4, maybe 2-3. To be perfectly honest, I was scared was scared to answer too low for fear of her thinking that nothing was wrong and I was scared to answer too high for fear that I was being too dramatic. The pain is chronic and bothersome, but it doesn't effect my ability to function. Isn't that enough? She assured me these questions purely for insurance purposes and I totally understood the need to answer them, but what came next through me for a loop.
      After asking various questions about my pain level, then she started to go more in depth. How long have I had this pain? I don't know. It started when I was in college. Well, was it a year ago? 5 years ago? I settled with somewhere around 3 years ago; it wasn't like there was an exact day where I woke up and was in excruciating pain. Then the toughest question of all came. Is the pain a sharp pain? Is the pain an ache? I had no idea how to even begin to answer this question. Isn't pain, just pain? "Well, it sure isn't some dull ache like a pulled muscle, but it sure isn't sharp like someone just stabbed me either" Can't my body just hurt? Then I told her how certain things feel like they were following asleep such as my pinky finger. I also expressed a "burning sensation on my back. She proceeded with he questions, "well is your finger numb?" I told her that it was. Then she asked, "Or is it tingling"? Wait, don't numbness and tingling go hand in hand? What does tingling even mean?
      I never thought their could be so many questions about something I thought was so simple. Answering questions and rating something have never been something that I have been good at. From past experience, breaking a finger rates as a 10 on a scale from 1-10, yet people say that child birth is like breaking 20 bones. What's the difference between numbness and tingling? If you push on something, I'm sure you'll be able to tell if your causing me great pain, purely by the amount of sound that is coming out of my mouth. What do you mean a sharp pain? I mean, I get migraines regularly that start out as a headACHE and then the pain eventually gets sharpER. All I could say is that I was sore. Pain in not a concrete thing and this Aspie doesn't understand things that are not concrete. You may be able to use words asking whether something is this or that, but what if it is neither? What if it just is?

Dear Matt

      I stepped off the elevator and made a sharp right, about to exit the building and head to work. One hundred feet in front of me there was the blurred vision of a man, about 5 foot with a very round face. In the distance, the face looked so familiar, but my mind could not wrap itself around who this “stranger” was. As I tiptoed myself closer, I was able to make out the light brown hair on the sides of his head and the little goatee. “Matt”, I thought to myself, “that isn’t Matt, for this man looks a bit harrier”. I took another ten steps forward as my jaw dropped to the floor. “Oh my God, I don’t know what to say, oh my God”, I shouted as I embraced him arms stretched wide. There was nothing to say; Matt was here, standing right in front of me.

            As the echoes of my shouting made its way through the hall, doors opened and people peaked to see what had just happened. Is she upset? Is everyone okay? Matt, although not working at the time, went into action and quickly moved me to a quieter, less chaotic room. “It’s okay, I’m just stopping through on my way to see my father”, he said. He was quick to assure me that everything was okay and he knew just what to do: distract me, talk to me. Due to the shock of this unfolding situation, there is so much that I feel that I didn’t get to say. When you don’t see or talk to someone who means so much to you, there is a lot to catch up on.

Dear Matt,

       This is a sweet note to you of all the cool stuff that I wish I had told you in that moment I had with you:

·      I’m not only graduating, but I’m graduating with my Bachelor’s degree

·      My brother is doing phenomenal and my mother is healthier than she has been since I was in high school.
·      Eileen graduated in 2016 and is graduating from Salisbury University with her Master’s in May
·      Cathy is the new you. She has your directness, but Amie has your sense of humor. I never imagined being able to find someone who could fill your shoes, but the two of them together do a pretty good job. It’s not that your not awesome, its that I want you to know that I am well cared for and I continue to have the great supports that you gave me while you lived hear. I want you to be able to have a sense of peace knowing I am in good hands.
·      Oh, did I mention that everyone has to come into work at 8 am now? No more sleeping in until 10am
·      As I headed off to work, I forgot to let you know that I got a job with student activities shortly after you left. Sara hooked me up after not getting the Ambassador position as you had suggested.
·      Now I have a table in my common area just for my puzzles. P.S. I’ll never forget when you liked to come up and flip my pieces over, just to annoy me.
·      Benjamin Plum Farm turned into the Acres Project and now we have a house!!! I might even live there.
·      Lastly, I miss you and as Eileen taught me, it’s not goodbye, it’s see you later!

Two Years and Many Life Lessons

     Social skills have never come easy to me, but over the past two years I have been fortunate enough to be surrounded by wise people who have taught me some of the most important lessons regarding social interactions and emotional coping. Last year I lived with an amazing Resident Assistant who taught me multiple lessons and this year I was blessed to have a Resident Coordinator who was wise beyond her years.
     Last year, I was placed in the same pod as an extremely talented and gifted RA named Eileen. Within our wing and floor of the building, there were four other individuals who just so happened to be on the Autism Spectrum. this made for some difficult situations and a lot of intense emotions. What made the situation more complicated was that I lived right across the hall from the individual who I was mentoring through the Office of Disability Services.
     Due to the intense emotions and multiple meltdowns between us, there were a lot of lessons to be learned and Eileen was our leader as we worked through these tough situations. Often times, when there was a rule broken or someone else was upset, I would begin to intervene or get extremely worked up myself. After watching how Eileen would interact with these individuals and myself, I gained a lot of insight. One of the most valuable lessons was taught to me when my mentee would become extremely impulsive or would act out and I immediately wanted to do something about it. Eileen showed me that sometimes others have to work through those situations themselves and those who are on outside should only intervene if someone was in danger or trouble.
     The second thing she taught me was to be quiet and think before I spoke. She was an amazing role model with very few words. It's not that she couldn't speak, but she was able to get her message across with out explaining everything. She taught me that some of the most powerful messages or conversations are conveyed with very few words. This has allowed me to think more before I speak and "dabble" in conversations instead of taking a whole conversation over.
      While Eileen taught me a lot of lessons, my Resident Coordinator taught me some invaluable lessons as well. Given the extreme need to help everyone or "fix" everyone up when they were upset, I would constantly be observing others emotions. One day, as I was sitting in the Residence Life office, my Coordinator Cathy walked in. I could tell that she was stressed, which automatically made me start to worry. I questioned if she was okay and she said something about being tired or stressed. I expressed to her that sometimes I just expect everyone to be happy and I don't like seeing people upset. With this, she made one of the most profound statements I have ever heard. "If you don't have a rough day sometimes, you won't be able to enjoy the good days". This taught to live more in the moment and enjoy the happiness and work through the tougher emotions.
     Later on during the year, I was talking with my coordinator and I had asked her something about what her siblings did for a living. She told me she had no idea, she never asked and didn't really care to know. Originally one would expect that to be a pretty strong statement, but she is the only one in her family who had gone to college. She doesn't worry about others because she worries about herself and what makes her happy. That small statement about how she didn't care what her siblings did for a living, showed me that I can't feed off of what others are feeling or what others are going through. I can care about others, but that doesn't mean I have to feel what they are going through. I need to take care of myself and do what makes me happy before I worry about others. If I have room to worry about others, then I can.
     These last two years have taught me so much about myself and the world around me. I can't wait to see what the next two years have in store.

Socialize With Your Peers They Said

     It shouldn't be a surprise to anyone that I have struggled to socially interact with my peers, my whole life. I can remember back to fifth grade when I would walk around at recess talking to my homeroom teacher Mr. Benson. I don't really remember particulars of our conversations except for the one time when I was talking about the myriad of medical issues/special needs I had and I stated that I have a lot of trouble with my eyes. He told me that he was as blind as a bat and all I could think about was whether or not he had trouble finding his glasses in the morning because he couldn't see anything. As you can tell, I'm quite a literal thinker.
     In middle school I would attempt to play on the playground with my peers, but most of the time it would end in arguments or me thinking that someone was mean to me. When we'd go to the psychologist during seventh grade to figure out the exact disability I had, I remember all the questionnaires my mother and I had to fill out. A lot of them asked if I was ever bullied and my mom would put down that I was quite frequently bullied. I wondered why my mom kept saying I was being bullied. I just knew what he nice kids were and who the mean kids were. There were just some kids I didn't get along with. What I didn't realize was that those mean kids were bullies.
     As I continued through middle school, I would start to walk around the circular path on the playground talking with teachers. They would try and make small talk with me which I just didn't get. They were bound to fix me so that I interact and socialize with my peers. They wanted me to get along with my peers despite the face that I was years ahead of them in some areas and years behind them in other areas.
     When I arrived in high school, my family physician referred me to a psychologist who promptly diagnosed me with an anxiety disorder and referred me to a wonderful school psychologist who he aptly described as an Autism specialist that was new to our area. Once the new school psychologist Dr. Hunter got to know me, she really reinforced these ideas these ideas that I needed to develop peer relationships and stressed the importance that nothing should limit me. She was also the one that gave my parents hope that I would make it to college and where I am today.
     All throughout high school Dr. Hunter stressed the importance of building these peer relationships. My parents jumped not he band wagon then too. They continuously encouraged me to make friends. At one point it came to the fact that I just needed to stop talking about my disability. At that point, I was too far gone and I was determined to teach others about my condition.
     As high school continued, the encouragement persisted as well. When I was in eleventh grade, I joined a transition class and started working on some seriously independent living skills. During this period of time, my peer relationships started to flourish some more. The problem was that everyone wanted me to be typical and make typical peers. All the friends I was making had special needs as well. Most had disabilities that were much more severe than mine. I kept insisting that I was making friends, but my family wanted me to be making typically developing friends as well. It just didn't happen.
     Here I am now, at 1:45 in the morning during my senior year of college. I am 23 and currently living in a building with a bunch of college Freshman. You do the math. As I sit here and reflect, I keep reinforcing myself that I can't keep socializing with the adults on the college campus. I have become relatively close with the Residence Life staff here and they have greatly contributed to my success. The one staff member has volunteered to assist me in developing some more independent living skills as I work on moving towards graduating and living independently.
      I sit here at 23 years of age, trying to figure out who the heck I'm supposed to socialize with. My Resident Coordinator is 24, one year older than I am. The students I'm living with are 18. I'm forced into this position of having to socialize with my peers, these 18 year olds who I live amongst. Really, are they my peers though, or are these staff members I work with on a daily basis my peers. I want so badly to just be friends with my Residence Hall Coordinator, but that's not professional on her part. Although it's not professional on her part, is it really fair on my part? Who are my peers? Who am I supposed to socialize with? As my mom says, I'm an adult now, it's okay to socialize with adults. It's okay to socialize with adults, but what if you have the maturity of the adults in your life, but your at a different part of your life.
     All the girls around me are all about parties and doing there homework last minute. I'm all about working on puzzles, scrapbooking, taking hikes, having real conversations about real things, not boys. Although boys are nice, I'm about living my life to the fullest and following God's path for me. I'm about being me, not about figuring out so much who I am any more.