tag:blogger.com,1999:blog-27270781607218940732024-03-18T23:23:37.286-05:00ManagementLiving with Epilepsysmithjryanhttp://www.blogger.com/profile/11376452745189618238noreply@blogger.comBlogger193125tag:blogger.com,1999:blog-2727078160721894073.post-11109806861307542672016-04-20T00:15:00.001-05:002022-10-26T03:51:01.992-05:00Pre and Post Interview Thoughts<div>Entry before interview:</div><div><br></div><div>Tonight I had two very intense seizures, so I'm still a little shaken. Other than last night, today was one of the most optimistic days I've had in months. The warm fresh air was blowing through the window, I was listening to an ASMR video while coloring in the book Emily Ferko sent me. </div><div><br></div><div>I was coloring because this morning because I felt like I had come to the end of the sketchbook from the hospital experience, and had little memories left from the seizures I've had in the past. I'm actually trying to visualize tonight's two seizures so I can draw them later. My memory is bad right now, and my blood sugar is low so I'm having a hard time concentrating. I ate some pizza and now I'm writing late at night, waiting for the food to hit my bloodstream.</div><div><br></div><div>So, as of right now I'm both excited and concerned. I shouldn't be either of them because if I'm too excited, I tend to get nervous, and when I'm too concerned, I get worried... two seizure triggers. I should just treat tomorrow like any other day. Just relax and enjoy the ride, because I know I'll do a good job, and I have little hope that I'll actually get the position. This sounds depressing, but it is actually helping me.</div><div><br></div><div>I get to try Uber for the first time which will be fun for when I need or want to go somewhere in the future. That's what I should be excited about. Plus, I get to have lunch with my friend and former boss, Joe, and talk about small things. I'm really more excited about that.</div><div><br></div><div>•••</div><div><br></div><div>Entry after interview:</div><div><br></div><div>Today had some trials that I wasn't expecting. I had a seizure at home while getting dressed and ready for the interview, and after the interview they popped a surprise design project in my lap for me to complete within an hour.</div><div><br></div><div>Obviously, I was worried about the seizure and having another one during the interview, and a little flustered and shaky about the quick design project that I wasn't expecting. I even called my friend and former boss, Joe, to tell him that I was worried, and he assured me that everything was going to be ok, and to just go with it. Everything turned out just fine. In fact, I feel like I thrived; an experience that I haven't had in a long time.</div><div><br></div><div>The interview went well from my perspective. All of the typical questions were asked, (what's your greatest strength/weakness type of things). I was nervous, but no more nervous than I've been in other interviews.</div><div><br></div><div>After the interview I was pumped. I called Sara right away because I knew she was concerned that the interview was running too long and that maybe I had a seizure and was sent to the hospital or something. Then I walked down the street to a pub where I used to frequent to have lunch with Joe to talk about how things went. I was in a great mood, and we ate an early dinner while making small talk. It was nice to reconnect with him.</div><div><br></div><div>No matter if I'm offered the position or not, I had a hell of a day that I'll never forget. It was the first step in proving to myself that I might someday get my life back on track and put epilepsy in the back of my mind... where it should be. Thinking about it too much has been making me crazy... in some cases, quite literally.</div><div><br></div><div>Thank you ALL for your continued support. I couldn't have even walked out the door today without knowing that you're all there for Sara and I.</div><div><br></div>smithjryanhttp://www.blogger.com/profile/11376452745189618238noreply@blogger.com2tag:blogger.com,1999:blog-2727078160721894073.post-67984139530878686972016-04-16T03:22:00.001-05:002022-10-26T03:51:02.920-05:00Visual Seizure Diary<div>I<span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"> recently re-discovered my fine art roots, which I haven't tapped into since my first year of art school. I've found it has been great therapy, and in that respect I've also been researching art therapy as a way to cope with some of the issues I deal with, epilepsy and otherwise.</span></div><div><br></div><div>I'm no great sketch artist, but I know these images are just for me, so there are no judgements or critique like there were in college. I've been watching some technique videos on YouTube, and watching a couple documentaries about Art Therapy. It's important to me to see and hear from others and how art has helped as coping strategy for them, whether it be visual art, writing, music, theater, etc.</div><div><br></div><div>So, while drawing I've been trying to come up with subjects, and I decided that I would like to draw something that meant a lot to me. Because my memory is so bad, and I usually don't remember my seizures, I often do have a still image in my brain of the last thing I saw before the lights went out and the seizure started. </div><div><br></div><div>So... that's going to be my subject. A visual seizure diary. I'm going to draw the last image I remember from my seizures with a date of the drawing and a short description on the back of the image to reference in the future. I've completed two drawings already from major seizure memories from the last six months.</div><div><br></div><div>I probably won't draw every seizure because a lot of them I just don't remember, like there's no image in my head before the seizure began. But to have a visual record of a seizure could be, and had been so far, a great way to cope with some of the issues that have risen since being diagnosed with epilepsy.</div><div><br></div><div>I have a nice set of colored pencils, and I'll keep purchasing drawing pads as I fill them. Hopefully I won't need too many sketchbooks in the future, because that equals more seizures, but I know it's my reality, and if I can find a way to make something positive out of this horrible disorder, then I'm game.</div><div><br></div><div>Hell, maybe I'll become a better artist in the process.</div><div><br></div>smithjryanhttp://www.blogger.com/profile/11376452745189618238noreply@blogger.com1tag:blogger.com,1999:blog-2727078160721894073.post-65234337540087351712016-04-10T20:56:00.001-05:002022-10-26T03:51:02.875-05:00Van Gogh<span style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">After a very horrifying EEG experience two weeks ago, then a near equal withdrawal experience last week coming off a couple of my medications, (I will get into this another time), today was the kind of day I needed to help me forget about that hell and get my life back to normal.</span><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">Today, Sara and I visited the Van Gogh exhibit at the Art Institute of Chicago. It was a gray, cold, and misty day, but I wasn't too worried about that. Just seeing his work up close really helped me get back in touch with my creative roots.</div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">The museum was packed with people clambering to see the exhibit. We were all like cattle being herded into, what seemed like, a small exhibit space, but once we got close enough to see his brush strokes, my eyes lit up.</div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">All week I've been doing some art therapy with a sketch pad and colored pencils. My drawings aren't really much to write home about, but to me, they've meant the world. I even find myself dreaming about my drawings, and waking up in the middle of the night to finish drawings that I had started the night before. No drug in the world could make my emotions come to the forefront of my psyche like they have this past week. That's why going to see Van Gogh's work, my favorite artist, that much more meaningful.</div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">I even forced myself to pick up a camera again. If you know me, then you know photography runs deep in my blood. Maybe my first time out shooting around downtown Chicago in awhile won't yield the best shots, (I shoot mostly film, so I've yet to develop and view my work), but just to aim my camera, and press the shutter was enough to make my blood warm.</div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">So, this past week, with all the shit going on in my life right now, to be creative for the first time in a long time was a pure joy. Something I know I'll look back on, and be proud.</div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">Pride in myself. A feeling not felt fully since my first seizure.</div>smithjryanhttp://www.blogger.com/profile/11376452745189618238noreply@blogger.com0tag:blogger.com,1999:blog-2727078160721894073.post-91811870337188510542016-03-31T05:22:00.001-05:002022-10-26T03:51:04.311-05:00Going Mad<span style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">It's hard to stay sane sitting in this hospital bed. No matter how many times I put on a smile and appear to speak the truth about how I feel, I'm really having a hard time. </span><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">I've said this before, but it's clear. All my current life I try to avoid seizures, but there's nothing I can do to cox the beast out of it's cave.</div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">The last time I had an EEG, I didn't have a seizure for days... no matter how many triggers that I tried. Then I had a seizure in the car on the way home from the hospital. I'm envisioning that for this stay as well.</div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">One good thing that has come out of this hell is that the doctors got to see a psychotic event. It could be from the medication, stress, damage to my brain, or a million other things. Thankfully it wasn't violent like they have been in the past, but I could see a red dot in the distance. This red dot was quickly making its way to the forefront of my vision, but I was too drugged to give the red I was seeing any power.</div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">While writing this early in the morning, I'm looking at a Van Gogh painting on my iPad to relax me. It's the same painting that I had hanging in my room as a teenager... "Cafe Terrace at Night". It was, what I thought, a peek into my future. Sitting abroad at a small restaurant, drinking a cool drink on a warm, clear night while people passed all around me. It's working ok, calming me.</div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">I'm also listening to the Foo Fighters. An unlikely source that calms me. Ever since Sara and I went to their concert at Wrigley Field last summer, I hear one of their songs, and I'm whisked back to that misty night. Beautiful, just like Sara, who wrote that wonderful experience into my life.</div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">I'm going to read a little about Van Gogh now that I have his work in front of me... even if it's digital. Maybe that'll help me pass the time this early, sleep deprived morning.</div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div>smithjryanhttp://www.blogger.com/profile/11376452745189618238noreply@blogger.com0tag:blogger.com,1999:blog-2727078160721894073.post-71814270305605036892016-03-27T04:21:00.001-05:002022-10-26T03:51:03.052-05:00Personal Purple Day<span style="background-color: rgba(255, 255, 255, 0); color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">I first heard of Purple Day for epilepsy awareness last year (2015). Basically, you wear purple to spread epilepsy awareness. It's huge on Twitter. My feed yesterday was full of epilepsy friends all wishing each other a seizure-free Purple Day.</span><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><span style="background-color: rgba(255, 255, 255, 0);"><br></span></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><span style="background-color: rgba(255, 255, 255, 0);">Unfortunately, yesterday morning I had a pretty strong seizure, so I wasn't on social media for awhile to see all the love that was being spread around by patients, friends and family. In fact, I completely forgot to wear any purple. </span></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><span style="background-color: rgba(255, 255, 255, 0);"><br></span></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><span style="background-color: rgba(255, 255, 255, 0);">Well, yesterday, the day before Easter, we went out for pizza with Sara's family. Sara and I got out of the car to see that all of her family members were wearing purple. At first, I thought it was just a coincidence because I didn't think anyone else knew what Purple Day was except Sara and I. But, no... they wore purple to show support for epilepsy, more specifically, Sara and I. </span></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><span style="background-color: rgba(255, 255, 255, 0);"><br></span></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">I sat pretty quiet during the dinner because I was still a little woozy from the morning seizure, in fact I wasn't 100% that I'd make it to the dinner. Instead, I fought through the pain to see her family, eat some good food, and have a few good laughs.</div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">We did just that, and I'll never forget this year's Purple Day. Sara and I have been having one of the most difficult times in our lives... health, money, you name it. To see her family show support like they did yesterday made me fight back tears the whole night, even now it's getting me a little choked up.</div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">This is what Purple Day is all about. Patients, friends and family all showing support for one another. It really is a beautiful thing.</div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">So, this post is dedicated to the Arnas family. Thank you all so much for your kind gesture and show of support. It's exactly what I needed after yesterday's seizure. It might be as simple as putting on a piece of purple clothing, but to me, it meant the world. </div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">Tomorrow (Monday), I start another EEG at Northwestern, and I'll have a little less fear going into it because of this year's Purple Day. </div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">Joe, Terri, Erin, Elise, Grandma, Bob, Debbie, and Jessica... Thank you!</div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">Dave Grohl - Times Like These</div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><a href="http://youtu.be/2w0JiLKQ3-o">http://youtu.be/2w0JiLKQ3-o</a></div>smithjryanhttp://www.blogger.com/profile/11376452745189618238noreply@blogger.com0tag:blogger.com,1999:blog-2727078160721894073.post-44937594399482797962016-03-26T07:34:00.001-05:002022-10-26T03:51:02.537-05:00Open Letter to My SeizuresI'm taking part in an epilepsy writing study and one of the assignments was to write an open letter to my seizures, and I thought I'd share it with you.<div><br></div><div>***</div><div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">Dear seizures,</div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">You've completely destroyed my life. Everything that was once looking up is now dead and buried. That's all I can say without getting too upset and risk having a seizure.</div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">There is a good thing that has come out of this hell. I became more close to my family, especially my wife. My wife and I loved each other before my first seizure, but neither of us really knew how deep love can actually be.</div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">After I had my first seizure, I no longer feared death. If fact, I thought that death was just around the corner. Years later my fear of death has returned.... Slowly. This is good news to me because it's a sign that I value life and want to get better, no matter how little the chances are.</div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">There's no advice I could give myself after my first seizure because the medicine side effects make my emotions uncontrollable. I would forget the advice during one of my psychotic episodes caused by the meds. I only recently have been able to recognize when such an event is inevitable and put myself in a safe place. It's very similar to a seizure aura. </div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">I know I'm going to live with you for the rest of my life, but I know I can't let you control my life. This seems nearly impossible because you have such a tight grip on my psyche.</div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">Basically, fuck you... and thank you.</div></div>smithjryanhttp://www.blogger.com/profile/11376452745189618238noreply@blogger.com1tag:blogger.com,1999:blog-2727078160721894073.post-32370104008191743002016-03-21T03:47:00.001-05:002022-10-26T03:51:02.274-05:00Difficulty Saying Yes<span style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">If you know me well, you'd know that plans in my world are always tentative. No matter how important the occasion, I have to have an exit strategy, because I can feel great one moment, and the next, feel horrible. </span><br><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">And I'm not just talking seizures. Yes, seizures definitely cancel plans, but I'm mostly talking about my mood. These medicines I take create severe ups and downs. Sara will attest that the switch from yes to no can happen within seconds. </div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">I can best describe the "switch" as a wave of emotion enveloping every part of my body. It starts out as a simple tickle in my chest that quickly turns to the grinding gears feeling that I've wrote about in previous posts. </div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">I find myself pacing the apartment, and I have the insatiable feeling that I want to hit something with my hand, thinking that it'll stop the extreme anxiety. I've done this several times, not clear minded, and have broke bones and bloodied my hands.</div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">This feeling scares me so much that I often cancel plans preemptively. I think Sara has come to expect that every plan we make, no matter how important, like a wedding, all the way down to weekly errands like grocery shopping, etc.</div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">What I'd like to do is stand up to this "no" feeling and start filling my life with a more optimistic outlook on my everyday life. I tried this years ago, and I was pretty successful at it, but since that summer I've all but given up. </div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">The thing about saying yes to events happening in my life is it is extremely rewarding in a lot of cases. Yesterday was an example. I said yes most of the day and felt very proud that I was able to get out of the house and walk around the mall, followed by a sit-down lunch, then stayed awake to watch a movie with Sara, then go on a quick grocery shopping trip way later than I've been out in weeks.</div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">But yesterday I did know my limits. After shopping for a couple hours at the mall and lunch, I had Sara drop me off at home for a nap so she could finish the shopping that she wanted to do. After the nap, I still felt great, but as I said before, my state of mind could change in seconds. I pushed through the fear and ended up having a great day, (although I was constantly asking Sara to tell me that I was doing a good job fighting the feeling to say no to our plans, no matter how simple they were). </div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">My point is that I'm going to try to say "yes" more in my life. I feel like if I do this enough, maybe the fear of something going horribly wrong will subside. </div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">Don't get me wrong, I could feel great all day and say "yes" to everything all day, and still have plans struck down. This happened two weeks ago. I came up with the idea of taking a walk in the nice weather and ended up having a pretty bad seizure while on the walk. I can't stop myself from thinking what would've happened if I was on that walk alone. </div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">So, starting with this post, I'm going to make a conscious effort to say "yes" to the events flouting around me.</div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">Wish me luck.</div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">***</div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">An example of the emotional switch I'm talking about happened while writing this post. I'm listening to music on my headphones and a song that really means a lot to me started playing and I had to say "yes," and push through and finish writing.</div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div>smithjryanhttp://www.blogger.com/profile/11376452745189618238noreply@blogger.com0tag:blogger.com,1999:blog-2727078160721894073.post-59834795174354438032016-03-09T14:58:00.001-06:002022-10-26T03:51:02.745-05:00Epilepsy Tech & Innovation<i style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress; background-color: rgba(255, 255, 255, 0);">This post is part of the <a href="http://livingwellwithepilepsy.com/" target="_blank">Epilepsy Blog Relay™</a>, which will run from March 1 through March 31.Follow along and add comments to posts that inspire you!</i><br><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><i><br></i></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><i>•••<br></i><div><br></div><div>My topic for the blog relay is epilepsy technology and innovation, and as a VNS patient I'd like to give you a little update as to how the VNS has worked out for me after five and a half years of treatment.</div><div><br></div><div>The first thing I would like to point out is that the VNS hasn't stopped or really lessened the amount of seizures that I've experienced, but I would say it's been a success because I feel like it lessens the intensity of the seizure and helps with recovery time after a seizure.</div><div><br></div><div>As of right now, my battery is at about 2/3 capacity... much more than I would've initially expected. I think I was told that I'd need to change the VNS battery every 5-8 years, but it looks like my battery will last a lot longer than that, which I'm grateful for.</div><div><br></div><div>My wife and I attended an epilepsy conference in Chicago, and there were many options for someone who's seizures are not well controlled with medication alone. We just glanced over the booths to see things like the deep brain stimulator, etc., so I can only speak for the VNS because it's really a part of my everyday life.</div><div><br></div><div>My VNS is on for seven seconds and off for ten by itself, without swiping the magnet over the device to double the "dosage," which then keeps the device on for one minute. </div><div><br></div><div>When the VNS is on, I feel a pulsing tickle in my throat. I've gotten used to it now, but there are some other side effects. </div><div><br></div><div>The one side effect that has most impacted my life is that I now have to wear a sleep apnea mask. I may have been just on the verge of needing one before having the VNS installed, but now it's a necessity. It's a pain to have to use a cpap, but I've found that I do sleep much better.</div><div><br></div><div>I wouldn't hesitate once about having this VNS surgery... with the battery changing surgery and all. I've heard that the new batteries last longer and soon my doctor will be able to log on to my VNS while I'm at home to see it's status and make changes if needed.</div><div><br></div><div>If you're considering the surgery and would like to know a little more about my experience with the device you can leave a comment below and we can talk privately.</div><div><br></div><div>Thanks!</div></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">•••</div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><i style="background-color: rgba(255, 255, 255, 0);">NEXT UP: </i><i style="background-color: rgba(255, 255, 255, 0);">Be sure to check out</i><span style="background-color: rgba(255, 255, 255, 0);"> </span><a href="http://www.cf-epilepsy.com/">www.cf-epilepsy.com</a> <i style="background-color: rgba(255, 255, 255, 0);">for more on Epilepsy Awareness.</i></div>smithjryanhttp://www.blogger.com/profile/11376452745189618238noreply@blogger.com1tag:blogger.com,1999:blog-2727078160721894073.post-7330344263390459352016-02-23T04:52:00.001-06:002022-10-26T03:51:01.812-05:00When You See Her, Kiss Her<span style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">Monday was spent at Northwestern Memorial Hospital again. This time to see my neurologist. The appointment went ok. We scheduled another EEG for April. They're not fun, but can yield a lot of good information for my doctors.</span><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">To get to the hospital, I usually ride with Sara to the city and stay at my sister's apartment, which is just a few blocks from the hospital, but she was unavailable, so I took the Metra train which is about a mile from my apartment. Side note: yesterday was a nice sunny day for walking, but damn I'm out of shape! I thought I was going to die when I finally reached the station. Once on the train, I was able to relax.</div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">The plan was I would take the train to the city, and I would hang out there for an hour before Sara left work early to pick me up from the station and drive us to the hospital. Ogilvie is a huge station with a nice food court for me to just sit and relax. So that's what I did. I bought a bottled soda, and a snack to hold me over until after the appointment when Sara and I would have time to eat a late lunch.</div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">Once I had my snack and soda in my hand I found a two seat table where I could just play on my phone for an hour while I waited for Sara to pick me up.</div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">The station was very busy, so I wasn't surprised when a police officer sat at my table during his break to eat his lunch. I mostly ignored him because, to be frank, I was a little uncomfortable sitting with a stranger, but I guess that's the way things are done down there.</div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">Once he was done eating, we started talking. And let me tell you, Mike the police officer really likes to talk! So that's what we did. Mike talked about his day, what it's like to be a police officer (his duties at the station), and just life in general.</div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">Of course, we stumbled into the topic as to why I was visiting Chicago yesterday. I told him a very watered down version as to why I was there, and that I have epilepsy, and was there to see the doctor. I told him about my seizures a bit, and then we got on the topic of Sara picking me up from the station to take me to the hospital, so we could be in the appointment together.</div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">Mike gave me a lot of good advice. He was an older police officer with a lot of advice to offer. He reminded me of my dad, who is a retired cop. We started talking about Sara, and he looked at me as seriously as a cop could look at someone and said, "you know she loves you very much." I agreed.</div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">Mike has seen a seizure before and said it was one of the scariest things he's seen as a cop, (that's saying a lot!), and that for Sara to have stuck by my side, fighting epilepsy, was a true test of her love for me. Again, I agreed and told him that, although I've never seen a seizure, I've been told that they are very scary. He even knew what an aura, (seizure warning), was. Pretty amazing, if you ask me.</div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">He gave me some instructions for when Sara picked me up at the train station. He said that when I get in the car, I should look at her, tell her how much she means to me, and to give her a kiss on the cheek. He said it's not about getting the chores done, (how did he know that I was struggling with that?!), or how much money I make, etc., it's just about letting her know that I appreciate her and love her the same way she loves me. </div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">So that's what I did. Once in the car on our way to the hospital, I told her about my encounter with Mike, and once we reached the hospital and got out of the car, I kissed Sara in the cheek and told her how much she means to me. </div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">This post is basically to thank Mike the police officer, and reiterate to Sara that she means the world to me and I wouldn't have the strength to fight epilepsy, and all the shit that comes attached to my seizures without her.</div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">So, thanks to Mike, and most importantly, thanks to Sara for taking a half day of work off so she could fight traffic to pick me up from the train station, then sit in another doctors appointment.</div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">I love you, Sara, and I'd probably be living under a bridge somewhere without you!</div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">The rest of the day went good, I was in a great mood, we ate a good lunch in the city, and headed home. I'm only up so early to write this because as soon as I left the train station, I was itching to write about my experience with Mike. </div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">What a great day.</div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">(10,000 views on my blog! Thanks to all of you who have supported me!)</div>smithjryanhttp://www.blogger.com/profile/11376452745189618238noreply@blogger.com1tag:blogger.com,1999:blog-2727078160721894073.post-11161173853658671112016-01-27T23:25:00.001-06:002022-10-26T03:51:02.031-05:00Rusty Gears<span style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">Every morning around 10am I get this funny tickle in my chest and stomach. I always describe it as rusty gears in my chest struggling to turn. This could be a couple obvious things. One could be that my body is craving medication, and this is usually the time when I take them. But the gears feeling sometimes comes without warning and not during the window of time where I'd be taking my meds.</span><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">This is not a conclusion, but one thing I always think about during this time is going to work. </div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">Nearly everyday I watch Sara get ready for work and we talk about whatever is on the news that morning... weather, traffic for her commute, or just headlines of the day. We used to do the same thing when I was still working, only I was obviously getting ready to go to work, too.</div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">I usually try to relax myself as much as I can. I fill my head with positive thoughts by watching relaxing YouTube videos or playing records. TV sometimes helps, as well.</div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">Could it be that these gears are my body telling me that it's not natural for me to be as complacent as I have been? Could watching Sara in her daily routine spark something inside of me that really wants to go with her; a feeling not too far from jealousy?</div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><div><span style="background-color: rgba(255, 255, 255, 0);">Whatever or wherever this feeling is coming from, it's been happening for years by my count. I usually just take my meds like always and slowly wait for it to pass. But I will admit that the passing of this feeling after I take my medication could just be me getting very tired from the meds, and the gears are just masked by tiredness.</span></div><div><span style="background-color: rgba(255, 255, 255, 0);"><br></span></div><div><span style="background-color: rgba(255, 255, 255, 0);">Where ever these feelings come from, they are very annoying and some days strong enough to outlast any attempts to block it. Then what do I do? </span></div></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><span style="background-color: rgba(255, 255, 255, 0);"><br></span></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><span style="background-color: rgba(255, 255, 255, 0);">That's the big question for all of my doctors. That's really the only place where I can voice this problem and receive an answer. So far they haven't been good answers because despite trying to go on more medication, the gear keep spinning, and they will, I believe, until I find somewhere to put myself that isn't within these four walls.</span></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div>smithjryanhttp://www.blogger.com/profile/11376452745189618238noreply@blogger.com0tag:blogger.com,1999:blog-2727078160721894073.post-11484224516546355222016-01-19T00:10:00.001-06:002022-10-26T03:51:02.071-05:00Guilt<span style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">Lately I've been feeling this tremendous guilt feeling. It starts as a tickle in my chest, which I describe as rusty gears turning in my chest. After that I feel a wave of depression and what I can only describe as guilt... It seems to be the only adjective I can use to describe it to Sara and my doctors.</span><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">If I leave the feeling alone and just let it play out, it only gets stronger and stronger. Soon I find myself actively trying to find things in my life, even years ago, to feel guilty about. If I let it go far enough, it lands on August of 2008... The time when I had my first seizure.</div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">I now notice this feeling right when it begins, and we've (Sara, my doctors and I) come to determine that my blood sugar is too low. Like I didn't eat enough when I take my meds.</div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">So far, eating while taking an emergency medication meant to help me after a seizure kills the feeling right away. </div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">I'm writing this now mostly for myself because I'm the only one right now who can notice it starting to happen. It's only after Sara asks if I'm ok, or how I'm feeling do I divulge this information.</div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">This is just another example of how strong these medications in my body can be. They trick me into thinking dark thoughts, like extreme guilt. </div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">Isn't there an epilepsy drug out there that can stop seizures while making me feel good inside? Instead, I have to take extra medications to bring me back to normal.</div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">I was watching tv with Sara tonight. A very depressing documentary series, and now I'm wide awake thinking about it. I know I'll just lay in bed staring at the ceiling for hours thinking and feeling too much to sleep. </div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">I took my evening meds, and just took an emergency med to help me relax and hopefully fall asleep comfortably and without my mind racing.</div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">They're kicking in now. My body feels heavy and I'm starting to to feel very tired. This is a good thing. Hopefully someday I won't have to feel this way anymore, but for now I'm having to combat strong seizure meds with very strong psych drugs. It's something I wouldn't wish on on anyone because it's absolute hell.</div>smithjryanhttp://www.blogger.com/profile/11376452745189618238noreply@blogger.com0tag:blogger.com,1999:blog-2727078160721894073.post-74832705016953978762016-01-05T02:38:00.001-06:002022-10-26T03:51:03.695-05:00Milwaukee Holiday<span style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">2015 went out like a lamb. When I say that, I mean my mood was extraordinary! There were some seizures peppered in there, but my mood had been most important to me lately. It always should be, really.</span><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">We spent Christmas in Milwaukee visiting Sara's family, and New Years at home with a homemade lasagna! Sara and I both agree that our time closing out 2015 couldn't have been better. We got to spend some quality time together, and we didn't get sick of each other once! :)</div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">We spent Christmas at her uncles empty condo, (he spends the winter in Arizona), and so that meant Sara could make cookies, and I felt free to get up and watch tv or read whenever I wanted. I haven't been sleeping too good, so that was a bonus.</div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">Our Christmas' went well. We gave and received great gifts, and everything went pretty smoothly. No drinking for me, which we now know is key to my mood stability. I should've known this years ago, and probably did, but ignored it for some time.</div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">The new year saw some seizures, but again, my mood stayed stable, and I was able to make it to 11pm to watch the ball drop in NYC, before heading off to bed. I seriously couldn't stay awake one minute longer! Sara's lasagna was delicious, as always, and so far 2016 has been ok.</div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">I found a new supplement called melatonin that has helped my sleep, but I still have some work to do in that department. Hopefully nothing too strenuous. I really don't mind having to get up for a couple of hours in the middle of the night. It's quiet, and in some ways relaxing. I just know I need the sleep to help with seizure activity.</div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">So, so far, 2016 has been in like a lamb, as well. Let's just hope this year is a year of change for the better, and a path to a better, simpler life is laid out before us.</div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">Happy new year to all of you!</div>smithjryanhttp://www.blogger.com/profile/11376452745189618238noreply@blogger.com0tag:blogger.com,1999:blog-2727078160721894073.post-80128442541054991422015-12-19T19:10:00.001-06:002022-10-26T03:51:03.945-05:00To My Mom<span style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">Mom, let me first start this post by telling you that I love you. You've seen the absolute worst of me and the absolute best of me. I'm your son, your first born child, and I want you to know that I haven't, and will never forget that.</span><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">When I first started having seizures, it must've been unbearable to watch one of your children go through so much pain. Pain, unfortunately, I still feel to this day. The seizures haven't stopped and neither has your strength of mind in knowing that someday this thing will be beaten.</div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">I watch Avery, your first grandchild, my niece, and I think about how I was once that small; needing your constant attention and love. You showered my with both. I had a great childhood, and I think your daughters would also agree.</div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">To see little Avery as myself, and to foresee the path I would have to walk as a person living with epilepsy... it's a thought too difficult to grasp. Especially as a parent, I'm sure.</div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">Our relationship is strained, I know. The last couple years have been hard, but you're my Mom. The only Mom I want or will ever have. We both have our tremendous flaws, as all people do, but I hope that in the coming months, and days like today, we can move forward and focus on the very best of what we see in each other.</div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">I'll do a better job letting you know how my weeks are going; seizures, doctor appointments, or just the general stress of living the life I lead. I know you'll offer me love, support, and advice... all things that a child looks for in a parent. </div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">I love you, Mom. Merry Christmas.</div>smithjryanhttp://www.blogger.com/profile/11376452745189618238noreply@blogger.com0tag:blogger.com,1999:blog-2727078160721894073.post-35221178985330256192015-12-06T23:41:00.001-06:002022-10-26T03:51:02.316-05:00Getting Out<span style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">It's late on a Sunday night. I just finished the final chapter of a book I've been reading and I thought I'd write a little about today.</span><br><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">Being a Sunday, Sara and I usually have some time together which has been a rare thing because during the week, she gets home and there are usually only a couple of hours where we see each other before I have to take my medicine, which makes me very tired, and I go to bed relatively early. </div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">It has been, as a personality trait, hard to get me out of the house to do anything that isn't related to errands or doctor appointments, but Sara tries hard to get me out of the house, even for a couple of hours, to do fun things.</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">I usually complain that I'd rather just stay home with her or do something routine like go to a mall and walk around, but she likes to try new things, which can drive me bananas because I've been so stubborn lately. Lately being the last couple of years.</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">Today she wanted to go to an craft fair at the Chicago Irish American Heritage Center close to the city. After a lot of complaining, I finally got in the car and we went.</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">As soon as we got there I had a little seizure. By little, I mean it felt like I was having an aura that never fully turned into a seizure. I used my VNS magnet and continued shopping and looking around the booths and talking to people. </div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">Slowly, I started to have a good time, and became very excited about being there, and have gotten out of my comfort zone for a couple of hours. This, as we've discovered over and over, is usually the case. I complain like hell at first, but after it's all said and done, I'm very happy to have had the experience. I don't know why I'm like this.</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">This might not be a particularly deep and emotional post, but more of a written thank you to Sara for putting up with my shit at first, knowing full well that I'm going to have a good time even though I've fully convinced myself before even stepping foot out of the house that I'm going to hate every second.</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">So, thank you to my darling wife for being as stubborn about getting me out of the house as I am about staying in the house. Without you, I would've seen all the amazing things I saw today and talked with some very interesting people... especially the guy who gave us a very heartfelt personal tour of the Chicago Irish American Heritage Center's museum... He was so overcome with emotion about talking about certain items that he shed some tears. Whoa.</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">Again, I know I can be a stubborn SOB, but I can also be very grateful. I have you, Sara, to thank for that. I love you...</div>smithjryanhttp://www.blogger.com/profile/11376452745189618238noreply@blogger.com0tag:blogger.com,1999:blog-2727078160721894073.post-60638398173127911652015-11-30T10:52:00.001-06:002022-10-26T03:51:02.787-05:00Thanksgiving<span style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">Even though the Christmas season has officially begun, I wanted to take a moment to look back on this past thanksgiving holiday, and how well it went. We ate great food, and were surrounded by great people.</span><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">First was the Smith thanksgiving from Wednesday night until Friday. Sara, my sister Jenni and I drove up from Chicago to Beloit, Wisconsin, my hometown, to meet my sister Julie, her husband Ryan, and their new baby Avery. We were then joined by my Mom and Dad. The food was amazing, and we laughed and and shared memories and made new memories to be shared in the future. We had Avery there, a new member of our family, to giggle with and experience what it was like to have a new seat at the table. She was adorable. I even held her, although I was scared as hell!</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">Sara and Jenni did a little shopping that night while I stayed at the house to rest. Apparently they got some great deals, which is always fun.</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">We left Friday morning so we could go home and take care of our cats for one night before Sara and I headed to Milwaukee to attend her family's thanksgiving. </div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">Once in Milwaukee on Saturday afternoon, we again ate great food and shared stories and played games. We stayed at her uncle's empty apartment as they spend their thanksgiving in Arizona.</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">Once Sunday came around it was time to come home, but first Sara and I had breakfast out at one of the local diners to spend some "us" time together. It was fun.</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">The best news.... No seizures! I was very nervous that the weekend would be ruined because I had been having a bad couple of weeks leading up to the holiday, but my doctor had me on extra medication to curb and potential problems. The meds made me a little sleepy, but everyone was ok with me excusing myself to rest when I felt too tired.</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">I wanted to share that this was the first thanksgiving holiday in three years where I wasn't sick. In 2012, I spent my thanksgiving in a hospital bed at Mayo Clinic for an EEG. In 2013, I had a horrible ear infection, and in 2014, I broke my ankle and was in a cast. This year, all there was to report was me being a little tired.</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">I wanted to tell my readers that I'm thankful for you, and appreciate all of the support and positive feedback that I've received. It's nice to know that I have so many great people on my side. I wouldn't be the same person without you!</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">Now, bring on Christmas!</div>smithjryanhttp://www.blogger.com/profile/11376452745189618238noreply@blogger.com0tag:blogger.com,1999:blog-2727078160721894073.post-8613427857222200322015-11-19T05:51:00.001-06:002022-10-26T03:51:01.903-05:00New Outlets of Support<i style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress; background-color: rgba(255, 255, 255, 0);">This post is part of the <a href="http://livingwellwithepilepsy.com/" target="_blank">Epilepsy Blog Relay™</a> which will run from November 1 through November 30. Follow along and add comments to posts that inspire you!</i><br style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><i><br></i></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><i>***</i></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><i><br></i></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><i>New Outlets of Support<br></i><div><br></div><div>I've been volunteering with the Epilepsy Foundation of Greater Chicago and attending many of their events, and I've been overwhelmed with joy at how much support other epilepsy patients offer each other. Not just the patients, either. Their families, friends, co-workers, the list goes on.</div><div><br></div><div>I've also, as many of you know, have met so many great people through social media sites like Twitter. Epilepsy patients and their families and friends all come together to ask questions about everything from medications, seizure experiences, work related issues... just everything across the board. And you'll get responses, too. I was just talking to a man who was recently diagnosed with epilepsy and he had so many questions for me that I was more than happy to answer because I know how I felt when I was in his position. I only wish I would've taken to Twitter for support as quickly as he had. Kudos to him.</div><div><br></div><div>The point here is, as an epilepsy patient, you have to have a solid support system in place for you to get through these tough days, and we no longer have to look just within our circle of family and friends (although I believe this is essential), we have so many new outlets for support. I have the Epilepsy Foundation of Greater Chicago, Facebook, Twitter, and the contact info from the people I meet while volunteering to start an email chain of support.</div><div><br></div><div>Let's all stick together. Epilepsy is a long, winding, and rocky road. Why not have others there to cheer us on throughout this journey?</div></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">***</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><i style="background-color: rgba(255, 255, 255, 0);">NEXT UP: Be sure to check out NEXT POST for more on Epilepsy Awareness.</i></div>smithjryanhttp://www.blogger.com/profile/11376452745189618238noreply@blogger.com0tag:blogger.com,1999:blog-2727078160721894073.post-71381804595695672122015-10-28T01:54:00.001-05:002022-10-26T03:51:03.005-05:00She Landed<span style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">Well, the day has finally arrived. My good friend Jacqui from the UK is back in town for a visit and I'm gearing up for a great week. We have some loose plans, but I'm mostly excited that I'll be able to talk to her face-to-face instead of through text and FaceTime.</span><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">We've been friends for about a year now. She first reached out to me through Twitter to ask about the VNS, as she was considering the surgery. It turns out it's not an option for her, but we kept emailing, texting and talking via FaceTime.</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">We quickly realized that our lives strangely coincided when it came to epilepsy, then our friendship grew to the point where we found out that we were similar it many more ways. Our personalities really did mesh well together. We hold nothing back about our lives. There really are no secrets... It's like she's my sibling, only 4,000 miles away. Truly a strange thing considering we come from pretty different backgrounds, and cultures.</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">We talk about everything. Epilepsy, family, work and the lack thereof, language, culture, food, and tea vs. coffee. The list goes on and on. I'm still baffled as to how our friendship grew so quickly. Now we do not have a day where we don't shoot each other at least one message to each other each day. I look forward to it everyday, and I will admit that now my day wouldn't feel right if I didn't talk to her.</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">Sara, and everyone else in my life knows about her and our closeness. They too are so happy that I have her in my life. Not just because we support each other epilepsy-wise, but also that I have a best friend, even though she's so far away. </div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">This is the second time in under a year, months actually, that she's been able to make the trip to Chicago. I know I'll be able to visit London someday soon, but I'm so happy that she's had the time and resources to visit Sara and I. </div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">This week we're going to walk the city. Talk, shop, visit museums and eat. I'm sure there will be a lot of laughing and crying, both of which I'm looking forward to.</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">I know that you're reading this Jacqui, and I want you to know... I want everyone else reading this to know that you've changed my outlook on not only epilepsy, but life itself. I thank you for that. This week is going to be great. A great week with a great friend. xx</div>smithjryanhttp://www.blogger.com/profile/11376452745189618238noreply@blogger.com1tag:blogger.com,1999:blog-2727078160721894073.post-41059864003833197802015-10-20T10:14:00.001-05:002022-10-26T03:51:02.403-05:00I See You Complaining<span style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">Like a lot of people these days we spend a good amount of time online checking status updates, tweets, eBay listings, shopping, the list goes on. </span><br><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">By now you probably all know that I have quite a bit of time on my hands with being on disability, so I probably spend a little more time on Facebook and Twitter than the average person. It's a nice way to stay in touch while being surrounded by these four walls.</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">I see a lot of positive posts, articles, funny videos, etc, but I also see your complaints. Yes, parking in the city in a bitch, coffee is way too expensive, your trash didn't get picked up on the right day, dating has become impossible for anyone over 30, the list goes on.</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">What I really want to see more of is people posting things that they're thankful for. Your kid is doing good in school, you found a twenty in a coat that you haven't worn in months, my cancer is in remission, I haven't had a seizure in X amount of days or, damn you look good in those shoes! Big or small, positivity matters.</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">I'm posting this now because my battle with Epilepsy has been a complete disaster. Meds don't work, but the ones that do cause so many negative side effects that I find myself at a crossroad... seizures or constantly thinking of harming myself. Which would you chose? That's what I thought. </div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">I chose the harm myself road a few times, and at least with a seizure you're knocked out and you don't feel anything until you wake up, and that is usually a headache or bit tongue.</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">My point is this: If people like me have to come to crossroads like these, then surely you can come to your own crossroad and decide to spread some positivity to those around you instead of gathering all the meaningless negativity that happened to you throughout your day and sharing it for the world to see, and most likely...... ignore, unfollow, and unfriend.</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">Stepping off the soapbox now.</div>smithjryanhttp://www.blogger.com/profile/11376452745189618238noreply@blogger.com0tag:blogger.com,1999:blog-2727078160721894073.post-52829554305171922192015-10-12T18:29:00.001-05:002022-10-26T03:51:02.578-05:00Klonopin<span style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">After a couple weeks of strong seizures while still recovering from shoulder surgery, my doctors thought it would be a good idea to put me on a low dose of Klonopin for an extended period instead of a higher dose which they were using just to break the seizure streaks I've been having as my seizures tend to group for days at a time. </span><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">I also started an antidepressant called Lexapro on a daily basis. All of these new medications seem to be working as I'm in a good mood while I haven't had any signs of a seizure in just about a week, which is about as long as I've been taking the low dose of Klonopin. A week doesn't sound like a long time, but with epilepsy you tend to feel when you're primed to have a seizure. Bad mood, body twitches, headaches, anxiety, depression... They all are signs that a seizure is inevitable.</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">For the last week I've been waking up in the morning with a strong anxious feeling, but once I take my morning dose of medication it all goes away in minutes. I've been looking for this combination of medicine for months, maybe even years. There are very little side effects so far. In the morning I'm awake and happy, and at night I'm ready to sleep and for the most part, sleeping through the night.</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">I needed this for my arm. I've been very worried that the seizures could hinder it's healing process. After the few seizures I've been having I could tell that if I didn't have the sling on, my arm would extend and stiffen (which is normal during a seizure), and it has stopped it from moving out of place.</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">This comes with perfect timing as I get the sling off next week. My arm is feeling stronger everyday and I find myself moving it in ways that I haven't been able to without pain even a couple weeks ago. Right now things are looking good. A statement I haven't made in months.</div>smithjryanhttp://www.blogger.com/profile/11376452745189618238noreply@blogger.com0tag:blogger.com,1999:blog-2727078160721894073.post-71336714870771349652015-09-28T05:55:00.001-05:002022-10-26T03:51:02.962-05:00Finally, Work<span style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">After two years being stuck behind four walls, I think I'm ready to finally re-enter the workforce. My arms will be both back to new and hopefully my spirits will be too.</span><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">Obviously, there are going to be disappointments. Maybe two or three jobs that I go through as a person with epilepsy, but I know that there's something out there for me.</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">I'm trained in graphic design, but I feel like working with others with epilepsy could be my true calling. Whether that be at the Epilepsy Foundation, a hospital, or who knows where else. As a person living with epilepsy, I feel like I can give very good advice on how to go on living a daily life with this debilitating disorder.</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">As far as graphic design goes, I see myself working in the non-profit sector. I just feel like helping others is the best way for me to live my life to the fullest.</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">Money is obviously an issue. Sara and I have been living hand-to-mouth since I developed epilepsy, and it's only getting worse. I don't know what to do. Money is money, I don't need much but I need enough to pay our bills on time and take some of the pressure away from Sara.</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">When I was let go from my last couple jobs (the most recent one was because of the seizures), it hurt me deeply and I still haven't quite got over that. Hopefully, even though setbacks are inevitable, I can put them aside in my mind and charge ahead.</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">My arm will be healed by the end other year. If anyone has and good leads for me, it would be greatly appreciated.</div>smithjryanhttp://www.blogger.com/profile/11376452745189618238noreply@blogger.com0tag:blogger.com,1999:blog-2727078160721894073.post-65113301251047367582015-09-10T02:06:00.001-05:002022-10-26T03:51:02.830-05:00@WGNMorningNews<span style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">Let's face it, news is depressing, but I found an outlet for receiving depressing information in a way that by the end I'm smiling. How is this possible?</span><br><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">Every morning I watch the morning news on WGN in Chicago. I've been watching it for years now. At first, I would watch it while getting ready for work. I would have the TV on while eating breakfast, taking a shower, and brushing my teeth. As I was getting ready, I would run around the apartment occasionally stopping to hear about the weather and stories of the day.</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">Then one day I started having seizures. This is when I went from a casual viewer into a outright fan. </div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">Epilepsy has put my career as a designer on hold for what seems like an eternity now. I look for structure in my day at home and I find that the news is an integral part of my morning, the structure I so desperately need now that my days are spent at home.</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">Now I wake up with my wife and feed her the news of the day (most importantly traffic now that she works in the city) while she runs from room to room preparing for her long day at work. The difference is, between all of the bad news that is offered to me on a daily basis, WGN finds a way to break this kind of news up with segments that lean on the lighter side of life.</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">I need this lighter side of the news because my life with epilepsy has been a whirlwind of emotion. I find myself not only having seizures, but also the psychological side effects of the seizures and epilepsy medications. I've had seizures during their program but have had the seizure end with a laugh. How is this possible?</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">The most depressing place to be while watching their program has to be the hospital while undergoing an EEG of my brain. (An EEG is basically a 3-7 day test where doctors glue wires to your head and provoke seizures so they can be measured.) I usually have 1-3 seizures, sometimes more. But everyday when I wake up strapped to a padded bed with wires glued to my head, I flip on the WGN Morning News to hear about what is going on around the city, and have a couple good laughs. I usually have a nurse, doctor or visitors in the room to share the program with, which is always nice. No one wants to be in a hospital room alone.</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">All I basically wanted to say here is news is important to me, but I need it fed to me in a way that by the time the program ends, I'm both informed and entertained. WGN Morning News provides that. Thanks to them.</div>smithjryanhttp://www.blogger.com/profile/11376452745189618238noreply@blogger.com0tag:blogger.com,1999:blog-2727078160721894073.post-84692266635791457702015-09-08T11:47:00.001-05:002022-10-26T03:51:04.070-05:00Bankart Lesion Repair<span style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">Last Thursday I went in for a Bankart Lesion Repair on my right shoulder. Basically, after falling on it so many times during seizures my shoulder became weak and would constantly dislocate. Even when doing modest chores like taking a shower or walking the garbage to the bin. I would lift my arm up and the shoulder would just pop out quite painfully. After some rest and slow turning I could pop it back into place, but in the days that followed I'd be in a tremendous amount of pain.</span><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">Many of you know that this is not my first shoulder surgery. The left shoulder was broken during a seizure and I have a titanium plate with screws holding that one together. Thursday's surgery seemed less invasive as the incisions are small, but the pain level seems to be just about the same. The recovery time is similar, too. 16 weeks of physical therapy.</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">My family, and especially Sara, have been so helpful. They know that I still run the risk of having a seizure which wouldn't necessarily undo what the surgeons have done, but rather strain the muscles that are trying to heal, which would mean a lot of pain and discomfort.</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">I've been seizure-free for over a week after a bad two-three weeks of seizures and bouts of depression and anxiety. So far, so good. I did feel my anxiety level raise this morning as I knew it was going to be my first full day alone, tending to myself with only one arm. I've since sat down and tried to relax myself with TV and looking up places for our friend Jacqui from England to visit when she's here in Chicago at the end of October. Something positive to look forward to.</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">Today and in the days that follow are going to be tough, but I know that each day is going to get better. I'm going to learn how to live one-handed, and I'm going to be able to raise my threshold for pain so I'm not popping pain pills every four hours or so. </div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">Hopefully when this is all over, I can put this behind me, not forgetting these days but rather using this experience, as I do with all experiences related to epilepsy, as a learning tool to prepare me for my life ahead. It's all going to be very slow, and I'm ok with that. I need time to get my brain healed and my mindset in the right spot for growth.</div>smithjryanhttp://www.blogger.com/profile/11376452745189618238noreply@blogger.com0tag:blogger.com,1999:blog-2727078160721894073.post-77375909149976149122015-08-30T19:52:00.001-05:002022-10-26T03:51:03.860-05:00Foo Fighters<span style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">Sara was trying to find tickets to the Foo Fighters concert at Wrigley Field any way she could, (searching online, radio contests, etc.), I thought the dream of going to the show was over by Friday night.</span><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">Friday night was the appointment date for my last test before I could be cleared for surgery. It was an ultrasound on my thyroid. Earlier in the day I got a call from my doctor with results from the blood test and apparently I'm having a hard time keeping my sodium levels up in my blood. So, I was already feeling pretty shitty about those test results, and then I had to walk into the hospital to have them test my thyroid, which my doctor said felt a little swollen. </div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">Obviously, after the test, I felt even worse. We were walking to the car and I asked Sara to cheer me up. This is when she let go of my hand and slipped the Foo Fighters tickets into my palm. "This should cheer you up," she said. I was floored. She somehow found tickets. We were actually going to see the Foo Fighters at Wrigley Field!! I immediately forgot about the ultrasound and blood test results. I was so excited.</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">Saturday came and we planned loosely how we were going to get to the concert... just details. It wasn't until Saturday night, so during the day I rested in bed and she watched some of her favorite shows on TV in the living room.</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">At about 1pm, I had a seizure while in bed. It was a short, strong one. I called for Sara and she was with me through the whole thing. Obviously after the seizure, I rested more to recover. We agreed that we were still on for the concert because my recovery time was pretty good. Eventually, we both got ready and we headed to the city.</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">Once in the city, we parked, ate a quick dinner, and caught the first Red Line train to Wrigley. It was raining off and on, but it didn't deter us. We arrived early enough to see one of the opening acts. Soon we were itching to get in line for t-shirts before the concert really started and they ran out of shirts. We left our seats, and got in the line for merchandise. </div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">It was a very long line, but we both agreed that we needed to have shirts. It's not very often that Sara and I get opportunities like this, so we had to have something to take away with us. Plus, the shirts looked so cool!</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">Once we were at the end of the line, I started to feel a rush of blood to my head and got very dizzy. Then came the seizure aura; the warning my brain gives me that a seizure is starting. I grabbed my magnet from my pocket and started rubbing it over my chest to activate my VNS while simultaneously calling out for Sara and telling her that a seizure was happening. It was lights out for me after that...</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">The next thing I remember was being carted off through the hordes of drunken concert-goers to the first aid station. I could hear Sara's voice in the background but couldn't understand what she was saying. She might as well been speaking a different language. </div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">We finally got to the first aid station which looked like a hospital waiting room, with several rooms with hospital beds available. I started to come around to understanding words and directions from the nurse while she was checking my pupils. I took the Ativan I had in my pocket for emergencies and waited for it to start working. It did.... Quickly. Soon, I was understanding everything, but still very confused as to why I was there, etc.</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">After waiting 30-45 minutes I suppose, I told Sara that I didn't want to leave. I wanted to see the show. After another quick check by the nurse, we very slowly made it back to our seats. I held Sara's hand the whole way there. She was very gentle with me and asked several times if this is still what I want to do. It was.</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">We made it back to our seats and the show hadn't started yet. The Ativan was making me feel very relaxed and in a very good mood. Sara and I made small talk, then before we knew it, the Foo Fighters took the stage.</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">The show was amazing. I kept looking around at all the people and how amazing it all was. When there was a break in the music Sara would lean in and ask me what I wanted to do.... I wanted to stay. We were experiencing something that we will never forget.</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">Towards the last song I agreed to go so we wouldn't have to fight the crowds getting out and back on the train. Soon we were back at our car and on our way home.</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">I wanted to tell this story, not because of me having a seizure, but rather how lucky I am to have Sara in my life. She, without warning, became my eyes, ears, arms and legs. But more importantly, she became my voice. </div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">This is how Sara and I live our lives. Years ago, I would've cancelled plans after the first seizure I had that afternoon, let alone insist on staying for the concert after my second seizure. We did it together. I'll never be able to repay my debt to her, but I know in her eyes there's no debt to be repaid.</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">I love you, Sara. If I could say those words in every language to get my point across, I would. </div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">I can't wait for our next adventure. Let's make next time seizure-free, though, ok!? :)</div>smithjryanhttp://www.blogger.com/profile/11376452745189618238noreply@blogger.com0tag:blogger.com,1999:blog-2727078160721894073.post-7540667364059849542015-08-26T00:45:00.001-05:002022-10-26T03:51:01.860-05:00Lexapro<span style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">There are many of us out there, not just epilepsy patients, who suffer from depression. I've been a sufferer for many years. Many of them have not been a clinical depression, but depression nevertheless.</span><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">When I was in high school I was going through a rough period, which many of us do at that age. I had dim lights in my room and I would play the alternative rock music of the time and lay on my bed, not wanting to see the outside world. I just wanted to be left alone. Some days were so tough that I would sit in my dark closet while the music was playing, sometimes until I fell asleep. It wasn't until I started really getting into art (which I would later pursue in college as a profession) that the depression finally lifted. But there were days that hit me later on in my college years that mirrored those days when I was locked in my closet, but the difference then is I had found ways to avoid it from taking ahold of me like it did then.</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">After college, I didn't see this depression again until my late twenties when I first developed epilepsy. From that day forward the depression grew and grew. Obviously medication for epilepsy doesn't help, but having your life ripped from you by this awful disorder is and has been devastating.</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">I've been put on meds for anxiety, etc to counteract some of the side effects of the many, many drug cocktails that I've tried over the years but I've never been put on a solid antidepressant. This is mostly because I only just recently agreed to finally see a psychiatrist for my mood disorder. He put me on an anti-anxiety med that I seem to be tolerating well with the new mix of epilepsy drugs that I'm taking, but the depression and severe lack of motivation has never really been addressed. Until now.</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">I now have a clinical depression. One where I can't find, though I've tried desperately, that outlet to kick the depression. Today I finally agreed or rather insisted that I be put on an antidepressant. I won't start taking it until after my shoulder surgery next week in case I have a negative reaction to it (I don't want any complications on the operating table), but I must say that I have never been so excited about starting a new medication.</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">The drug is called Lexapro. I've done my homework on its side effects, which seem to be minimal, but I won't know for sure how it'll react to my epilepsy meds until, like I said, after my surgery.</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">Maybe now, once taking it, I will find a way to live my life again as it was meant to be lived. Not in a chair, wallowing away at how horrible my life has turned out because of epilepsy, but rather refreshed and ready to take on the newest chapter in my life.</div>smithjryanhttp://www.blogger.com/profile/11376452745189618238noreply@blogger.com0tag:blogger.com,1999:blog-2727078160721894073.post-20085090687459635852015-08-07T03:34:00.001-05:002022-10-26T03:51:02.149-05:00Whiplash<span style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">Yesterday Sara was in a minor car accident. She was stopped at a red light near our apartment on her way to work and a man crashed into her. She's ok, but she does have some pretty bad muscle pain from her head jolting around. We went to the ER to get her checked out when the pain became too much to bare. </span><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">Sadly, we knew the procedure at the ER far too well due to me being in the ER more times than I'd like to remember. We waited a long while before the doctor could check her out and give her some muscle relaxers and recommended some over-the-counter pain meds. She's sleeping well, but he said the pain will only get worse in the next couple of days. This means I'm going to be <i>her</i> caregiver as opposed to her being mine, which is usually the case.</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">I haven't had a seizure for what's going on 25 days. This is very unusual, and I'm not used to it. I can say honestly that it has me both worried and relieved. Worried that the "big one" is just around the corner, and relieved that it's possible for me to have gone this long without a seizure. </div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">I'm not sure what I'm doing different, but I'm grateful that my brain has calmed down this summer. Last summer I was having 3+ a week while trying a new medication, so my doctor at Northwestern switched me to a "last resort" medication called Felbatol. Of course, I'm still taking three other epilepsy related meds with it, but Felbatol was banned in America for awhile because some doctors in the UK believed it could cause liver damage. I haven't had any problems that my doctor told me to watch out for, but on the higher dose he had me on at first caused paranoia and severe anxiety. This is a major reason I'm also taking an anti-anxiety drug. That, and some of my other pills can, and have, caused some psychological damage.</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">I know of epilepsy patients that don't experience these sorts of side effects but I guess I'm prone to them and have had to learn how to combat them through therapy. It's very hard, but I've managed to stay out of the psych unit of the ER for nearly a year now.</div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;"><br></div><div style="color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; -webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); text-decoration: -webkit-letterpress;">So, hopefully I stay seizure-free for the upcoming weekend where Sara needs me the most. The last thing our small family needs right now are two sick people wandering about, wondering when our luck will get better. For now I'm going to try to be strong, and be the man I know I'm able to be.</div>smithjryanhttp://www.blogger.com/profile/11376452745189618238noreply@blogger.com0