Posted in #teamhadley, 2018, Beating Hemiplegic Migraine, Botox, celebrate, Chronic Migraine, Daily Migraine, Dislocated Jaw, Dr. Cheesy, Dr. Lucchese, Dystonia, Ellis Fischel, Ellis Fischel Cancer Center, ENT, family, Health Blog, Hemiplegic Migraine, Hemiplegic Migraine Research Study, HM, Infusion Center, Infusion for Hemiplegic Migraine, Infusion for migraine, invisibile illness teacher, Invisible Illness, Just Keep Keepin On, Lock jaw, MU Health Care, port, portacath, Rare Disease, Rare Disease Awareness, SHM, Sporadic Hemiplegic Migraine, support, thankful, TIW, Today I Win, University ER, Winning 365 Days

Chronic.

Sorry ahead of time for the length of this post!!! Making up for lost time.

If you are one of the almost 45% of people in our country that has been diagnosed with a chronic illness, then you know that your life will, more than likely, forever include more doctor visits than the average person, daily work put into your health, and setbacks.

Let me be the one to tell you straight….set backs are hard. This past week I had the first  set back I’ve had in awhile, breaking a record time without  one in my crazy health rollercoaster. They suck. After ten months of progress a bad day hitting you can really catch you off guard. And when it hits, all of the complicated emotions that come with having a chronic illness come slamming back too easily. It feels like a punishment to have a record you worked so hard for have to be started over. You emotionally question the “WHY” all over again, even though you logically understand the reasoning behind your disease. A set back is an instant, often unexpected, always unwelcome reminder that You have a chronic illness.

For me, this past Monday at 5:00am I was woken up in pain. I shot up out of bed immediately realizing what that pain was before I was completely awake. My jaw. Dislocated. Immediate tears. The pain of my jaw being locked open makes me sick to my stomach. It feels like an ice pick is stuck stabbing me in the jaw joint, while my nerve sends a shooting, electric shock like, pain down my jaw line. It can often be worse than the pain of my actual migraine. I knew my week had been a bad one, knew that the pull in my face had gotten progressively worse over the weekend and that the tingling in my right hand was slowly beginning to move up my arm. But I had made it all week and through the weekend, why couldn’t I make it just five more hours to my infusion that would get me back on track? I knew what that meant the day had in store for me. But I stayed hopeful that my infusion would be able to solve my problem, especially since it hadn’t happened in so long. I texted my neurologist at 7:00 that morning and he responded three minutes later with a plan. With my regularly scheduled infusion appointment still a couple hours away, and time not being on my side in these circumstances, my mom called the infusion center to see if we could move my appointment earlier. As usual the infusion nurses, willing to do anything to help, agreed and told my mom to bring me in as soon as she could. While my weekly cocktail did improve my migraine pain and other symptoms it unfortunately didn’t solve my jaw issue. But it was a start.

This is where I brag on the care I get in the infusion center at Ellis Fichel, and this being one of the reasons I wanted to post a blog. The nurses there are amazing. Easily all taking spots in the top ten nurses I’ve had over the last five years. Within ten minutes of getting to the hospital they had me back in a room, with my port accessed and the first round of my medicines administered. That timing doesn’t happen in the slow moving world of the hospital!!! An hour into my infusions I receive a second dose of one of the pushed medications. My doctor had told me to check in with him with an update at that time. I texted him, but my nurse went right to work on getting ahold of him to make sure he got the update.

Dr. Cheesy told me to finish out my infusion and then check back in with him. We were all disappointed because that meant waiting at least three more hours before taking the next step. It was a long three hours. My nurse was doing anything she could to make me more comfortable. As soon as my magnesium drip finished my nurse pushed my last round of medicine and started calling my doctor. My infusion was complete. My jaw was still dislocated. I would have to be admitted. Immediately she did everything in her power to speed up the process to get me upstairs. All I wanted was to get admitted early enough in the day to have my jaw reset before the next day. That’s all everybody wanted. The nurses let me stay in my dark room for the next few hours while we played the waiting game, instead of having to wait in the big admissions area surrounded my tons of people with my mouth stuck open. Even after my nurse was off for the day, one of the others kept in contact with my doctor until they were ready for me upstairs. They even wheeled me up themselves. I’m telling you these ladies are all the best of the best. I’m lucky, and my whole fam is incredibly thankful for such phenomenal care and support every single week. I couldn’t find better care if I tried. If you’re in Missouri, making a trip to the Ellis Fischel Cancer Center Ambulatory Infusion Center at the University of Missouri Hospital is a choice you wouldn’t regret. Their slogan “Where YES finds a way”, is so accurate. I could continue to go on and on about them but I should probably move on or this blog will be entirely too long. 💕


Back to the update! Once I was upstairs the neurology resident on call came in fairly quickly. That consult went about as hilariously ridiculous as normal. Why do they never read a patient’s chart before they see them?! As my dad comuinicated for me he mentioned that I hadn’t eaten anything since dinner the night before. This being an important fact mostly because I couldn’t eat, but also because I wouldn’t have to wait for food to be out of my system before the ENTs could put me under for the necessary procedure. The resident looked extremely confused as he asked, “Why can’t you eat? Is it because your mouth is too dry when you put food in it?” It was our turn for my dad and I to look confused. Sir, please open your mouth and without closing it try to eat.🙄 Let me know how that works out for you!!! The meeting with the on call neuro attending went about just as well, I’m pretty sure after repeating ourselves multiple times we taught him what Dystonia was. But he did finally agree to page the ENTs. Crazy  how much reading a patient’s chart beforehand to see the instructions put in by the doctor hours before can help!

Per usual, within 20 minutes of being paged the ENTs arrived for the consult. The doctor put gloves on to exam my jaw as he talked to us about the process and what has worked best in the past. Without wasting any time he left to get things ready for the procedure. Within the hour the team was back in my room having me sign the consent papers for anesthesia before taking me to the OR for the procedure. I repeat, all with in ONE hour. The ENTs are also one of the best teams I’ve worked with.

I was greeted in the OR by a nurse I’ve had before. He said, “Young lady you and I have done this before really late one night.” He quickly celebrated with me that that was ten months ago, and the last time I’d had to have it done. I watched the ENT doc wrap layers of gauze around his thumbs as he got ready to reset the jaw, and remember the anesthesiologist pushing the first medicine to put me out. Next thing I know I’m waking up in recovery with the nurse next to me, ready to help with the pain. It’s a different kind of pain than the unbearable electrocuting pain while being dislocated. They have to wrap ace bandages around my head to stabilize the jaw, making sure it doesn’t slide right back out. However, I immediately noticed the wrap was much tighter and more uncomfortable than normal. It bothered me through the night almost as much as the pain from my jaw itself. At one point the nurse paged the doctors asking if we could loosen the wrap just a little bit. But they turned her down saying while I was still unconscious they had wrapped the bandage too tight, but when they took it off to fix it, my jaw slid right back out and had to be reset all over again. No Bueno.

When I got back upstairs my dad and boyfriend were waiting for me. Sean volunteered to stay with me for the night, because he’s just good like that. 🙂 It was honestly a much more rough night than I was anticipating. Worse than most times before. Although the ENTs had ordered pain medication for me, which has always been necessary afterwards…seeing as I had just had a mini “surgery”, the neurologists had taken the orders off and only let me get one dose of Tylenol the whole night. It was horrible.

Sean is a rockstar. He turned on 50 First Dates in an attempt to distract me. He had to continually pause it doing whatever he could to try to help the pain. I was hurting. I was sick to my stomach, probably because I hadn’t had anything in my system besides medications for the last 24 hours. I was scared I was going to throw up and send my jaw right back out of the socket. After calling my nurse in for help we were both equally as frustrated that the neurologist had taken all rescue medications out of my orders so the best solution my nurse could offer me was trying to eat saltines. And I’m still surprised how uncomfortable and bothersome my wrap was. After I got to take it off 24 hours later my neck was bleeding from how irritated it was. It was such a hard night.

Now, let me take a minute to get sappy…which I’m typically not. Sean is the funniest, kindest and best person. Without hesitation he is always there, willing to hang out in the hospital, stay up all night and sleep in the awful hospital recliners. Everyone deserves a Sean. 😊❤️

​At the end of the day, I shouldn’t really complain about the minor bumps in the road. Although it took a minute for the neurologists to come around, the two teams did get the main goal accomplished, getting the jaw reset before the next day, pretty quickly. That was huge for obvious reasons, but also because that meant I only had to spend one night stuck in the hospital. Which is huge!! Back to those infusion nurses being awesome, the nurse I’d had the day before dropped by with a card and bracelets wishing me to feel better quickly.


We’re not exactly sure what brought the attack on this time. The weekend before my jaw had popped and sent that electric shock down my jaw line out of the blue, making my jaw sore for the week. But I had also just gotten my Dystonia Botox a few days before, we wonder if that triggered something for some reason. We won’t ever know for sure. It sucks that I have to start over with what I can eat and that drinking out of a straw is painful again. I’m bummed that I have to start my record of being attack free over. But I’m thankful and amazed that I did make it 10 months without a full blown attack. I’m lucky that we’ve found ways to make my chronic illness much more bearable. Any progress is appreciated and I’m still trying to find a “win” in each day…big or small. I’m still in pain everyday. I continue to fight these invisible illnesses everyday, as I will my whole life. But for right now I’m not just fighting them, I’m beating them.

If you made it to the end of the little book I just wrote, good for you! I appreciate it…and also need to get better at summarizing more. It feels good to post again 🙂

~Hadley

This summer has been good to me! Just some pictures for fun 🙂

 

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Posted in #teamhadley, 2017, 2018, Beating Hemiplegic Migraine, best friends, Botox, celebrate, Celebrate gif, Chevrolet Trax, Chevy Trax, Chronic Migraine, Daily Migraine, Dr. Cheesy, Dr. Lucchese, Dystonia, family, Friends gif, Health Blog, Hemiplegic Migraine, Hemiplegic Migraine Research Study, HM, invisibile illness teacher, Invisible Illness, Just Keep Keepin On, MU Health Care, port, portacath, preschool teacher, Rare Disease, Rare Disease Awareness, Rare Disease Awareness Day, Rare Disease Awareness Day 2017, Rare Disease Awareness Day 2018, Seizures, SHM, Sporadic Hemiplegic Migraine, support, thankful, Today I Win, Uncategorized, University ER, University of Missouri Health Care, Winning 365 Days, writer's block

Winning 365 Days

Hi, friends! I can’t believe it’s been close to a year since I’ve published a blog. I’ve worked on many but never got the right words across. I think I needed a break from talking about my sick life so much. I’m grateful I still have people reach out to me and that I continue to virtually meet and connect with more fighters. I hope this post still reaches people. I also hope it gives some others with invisible illnesses some hope. 🙂

February 2018 is over now. Who can believe that we’re already moving onto March? I’m glad for this month to be behind us, and have been ready for it be to for awhile. And not because mushy gushy Valentines day annoys me. 😉 February 28th, 2018 marks one year since I have been in the emergency room. Did you hear that people? ONE YEAR. For the last five years I never believed that would happen. Now, everybody pray I didn’t just jinx myself. I won’t be able to fully put into words the amount of thanks and weight off of my shoulders this brings, but I’m going to try to get as close as I can.

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Since 2012 I’ve been fighting a battle bigger than I ever could’ve imagined I would be up against. Hemiplegic Migraines and Chronic Daily Migraines stole five years of my life, nearly completely. I’m in the 0.02% of the population struggling with the ridiculous number of symptoms that come with this disease. It’s like a pinball machine of symptoms; each one triggering another up and down my right side. And even though it’s been five years, I still don’t like saying “I have a disease” in a sentence.

For those of you that don’t know, October 26, 2012 I was sitting in my sophomore Spanish class when I fell and had a seizure for the first time. Starting when I was 16 it looked like I was having a stroke more often then I looked like a “normal” teenager. Two years and 11 doctors later I was diagnosed with Sporadic Hemiplegic Migraines(SHM). I still wish the name didn’t end in migraine and maybe it would be taken a tad more seriously from those that don’t know anything about it. If you’re interested in some facts check out this link. (Diamond is where I was diagnosed) —> https://www.diamondheadache.com/patient-resources/types-and-symptoms/hemiplegic-migraine/

Here’s the best part, this year I’ve actually been “doing life” more than ever! Who gets so excited about adulting? Instead of weekly emergency room trips (seriously weekly), I’m working, driving, living. I work at a preschool which is something I have wanted to do, until starting my career, since I was in elementary school. Last week one of my sweet preschoolers asked what job I wanted to have when I get big. I hope, and plan, to become a nurse instead of a broadcast journalist like I planned for seven years. I would love to work in an infusion center, or specialized migraine clinic someday. She then told me when she gets big, she wants to be Ms. Hadley. ❤  That sure pulls on my heart strings. I love those kiddos.

I bought my own car and I’ve never been so happy to spend all my money. Hello more freedom as a 21 year old!! I’ve socialized more in the last six months than I have in the previous five years (I’m still pretty lame). My next step, aside from some time graduating from college, is to move out of my parents house before I’m a loser. Even though for now, that’s still the best choice for me.


​All of this being said, life still isn’t the easiest. While I don’t visit the emergency room weekly, I still go to the hospital every week. IV meds have always proven to help me the most so instead of getting them as a rescue in the ER, I get them as a preventative. Every Monday I go to the Ellis Fischel Cancer Center Ambulatory Infusion Unit for a six hour infusion, followed by an appointment to my neurologist, chiropractor and pharmacy. That probably sounds dramatic to most people, but I couldn’t be more appreciative of it because the routine has truly saved my life. I hated having to be a frequent flyer in the emergency room, being the main source of treatment obviously isn’t what that’s intended for. But it was what I was forced to do while I was doctor-less (or under the care of a useless neuro) for too long. Just because I haven’t been in the ER for a year doesn’t mean I haven’t been hospitalized this year. My attacks and damn jaw still occasionally decide to go hay wire, getting me admitted to the hospital. That’s just a detail I’ll have to accept likely for the rest of my life. I won’t even put out there the amount of medication it takes to keep me going since medication use can sometimes be so controversial these days. But I will say, while I don’t love having to use so many, after you lose so much of your life, you’re incredibly thankful for modern day medicine. I also use migraine and dystonia botox, weekly chiropractor visits and semi-frequent massages to get relief. Even with all of these drastic measures I’m still in daily pain more than you would ever know. That’s both the pro and con of an invisible disease. But how many times have I reiterated that I’m grateful for the progress that I’ve made?

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Infusion Day!

Lastly, and probably most importantly, the power of prayer and God is so incredible. While I always had faith, I often found myself questioning God’s reasoning for me having this wreck my life. I still don’t, and probably never will, understand that reasoning, but I trust in it now. For, when life gets too hard to stand, kneel. I’m confident that every prayer my way, which I know is an unbelievable number, made a difference. I truly believe my greatest blessings in life are my family, support systems, and Dr. Cheesy. Dr. Cheesy saved my life. That man has believed in me, fought for me and dedicated so much time to me since my first appointment with him. He kept his promise he made me on that April Fools day initial appointment. Any other time I would’ve thought it was an April Fools prank, but with him I knew in my soul it was not. Dr. Cheesy has seen me every Monday for the last (almost) two years. He has studied me. He continues to test me, always looking for more answers, more ways to help. He’s texted me back past midnight with attack plans when a bad HM attack hits, and fought back with the hospital when they’ve tried to push against him. That man has gone to multiple conferences in many states specifically for my  case, had special meetings for help with me, and presented my case in seminars to reach more doctors. Doctors like him are one in a million. Dr. Cheesy promised to give me my quality of life back if I gave him some time. That’s exactly what he has done.

The last 365 days have been some of the best of my life. I have never won so much. Support and family are priceless. Dr. Cheesy is an answered prayer. God is so so good. 2017, I love you. Today, I win.

 

 

 

Posted in #teamhadley, Beating Hemiplegic Migraine, Botox, Chronic Migraine, Daily Migraine, Dystonia, Health Blog, Hemiplegic Migraine, Lidocaine Infusion, Lidocaine Infusion for Migraine, MU Health Care, PCU, port, portacath, Seizures, Today I Win, Uncategorized, University ER, University of Missouri Health Care

FOUR WEEKS

On Friday, May 6th, I got released from a 13 day hospital stay and headed home. Home was where I needed to be. Graham was stoked to have me back, he talked non stop to me as soon as we picked him up from the Bequette’s house and made sure to carry everything inside so I didn’t have to. I was still so heavily medicated my mom just wanted to get some food in me before I went to bed, sweet G talked to me the whole time we ate, even though every minute or so he’d have to ask if I was okay because my head would bob forward into my bowl. Trying to act like I’m okay and it being physically impossible for me to fake it just for him, at a time like that, is solely one of the hardest parts in dealing with this nasty disease. BUT I WAS HOME.

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For the weekend my brothers and pup were all actually so glad I was easily found in my room, they all kept just coming in because they liked that I was in there, and I liked that too. I got to spend the day at my grandparents’ house, like a typical weekend, and get knee deep in the pond with Jax. Kelsey and I resumed our typical Grey’s Anatomy watch party positions on my couch and I got to sleep in MY OWN BED! I was in high Heaven. I’m always complaining about being home too much, then I don’t get to come home for a few days, now I don’t want to leave it! Back to normal felt so good.

On Monday afternoon, the 10th, I went to my check in appointment with my Neurologist where we were supposed to make a game plan. I was pretty aware that we’d be scheduling lidocaine infusions but I wasn’t sure what the details attached would be, such as a scheduling date. Lidocaine Infusions for migraine is a fairly new treatment idea catching on in the world of migraine. These treatments are something I had been researching since August of 2015. I had asked a couple of other doctors about them, one saying he didn’t know and one saying I should give it a shot but that no one around here did anything like it. I had an appointment to travel to a specialized clinic in Texas this winter, but the doctor fell very ill days before I was supposed to see him and he is no longer practicing. I was in communications with a doctor in Washington D.C. that I was referred to that did Lidocaine Infusions for migraine, until I first met with Dr. Cheesy who suggested trying those before I even got the chance to ask about them.

Dr. Cheesy told me I would be hospitalized for 5-7 days in the ICU, the ICU being just a precaution as it is still a relatively new idea and Lidocaine is a serious drug that can seriously affect your heart. After discussing the idea a bit more at my appointment that Monday, Dr. Cheesy asked me when I would like to try them. I sarcastically said, “I’d start tomorrow” and literally laughed. He said, “Okay, can you be here by 11 am? I was going to have you come in tonight but I figure you want to go home and get your stuff together.” I seriously had to ask him if he was joking, most doctors take months to schedule the smallest of things.

He was serious. Tuesday, May 11th, I checked back into the hospital. At first, I wasn’t too bothered that I was having to come back in. I was glad that my new doctor was continuing to prove to be a “do-er”  and try new things. I was glad to be trying something that I had put so much research and back hours into, and interested in trying something new that had the potential to completely cut back all things hospital to a reasonable amount. I knew I needed to try it. Dr. Cheesy told me he didn’t expect to see drastic results with me until around day 5, because I’m complicated.

What I didn’t think about, however, was that I had just been sent home with several extra things to help control the pain and movement issue of the jaw on top of having my regular HM rescue medications that I try. Because the Lidocaine was a new treatment for me, I could only take my daily medications that couldn’t be skipped. Rescue medications I know work to help abort an attack, like Benadryl, were avoided in order to be able to differentiate the difference between the lidocaine making a difference or not. Unfortunately, because of this, the timing just so happened that an attack hit right on day two of me trying the new infusions. Since rescues weren’t an option, by Friday I was in full attack mode and the jaw locked open.

Without a doubt that was the most painful time my jaw has ever been locked open. It had just so recently been reset that my jaw wasn’t even supposed to be opened that far. As soon as it happened I started bawling and then looked at my grandma and said, “I’m not supposed to open my mouth all the way for three months. It’s not supposed to do this!” As soon as it happened, Kelsey, my best friend, jumped up to call the nurse, then sat in my bed with me for hours. After getting X-rays we knew my jaw was dislocated again, but it was Friday night by the time we knew it would have to be reset so I had to wait, again, until the next day. I had to be taken off of the Lidocaine before I could have the sedation medication used in order to comfortably have my jaw reset, anyways, so that night Friday we stopped the Lidocaine starting the wait. My doctor ordered that I have a NG feeding tube placed again, for the first time in the trip I was trying to keep the tears in and I was having a tough time staying positive. Just days before I had gotten my previous NG tube out and had said I wasn’t ever going to get another one again, but here I was less than a week later, hoping that the metal weight was correctly placed in my stomach. While my Dad left the room for bit I had a heart to heart with my nurse who let me cry it out, then  got me back to my conquering attitude and placed the tube.

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The next few days went okay, I wish they would’ve been better. I got to resume the lidocaine after 48 hours of being removed from it but I wasn’t allowed to have my drip increased for several days, originally the plan was to have it increased daily, putting me at a high dose by the end. Lidocaine can seriously affect your heart so every six hours I had to get an EKG, thankfully those continued to come back within normal range. Because I was stuck at a lower dose than expected and my heart was handling the medication well, I did not have to stay in the ICU like planned. I spent the whole ten day trip on the PCU unit, which is where I spent a majority of the week before so I was thankful for familiar faces. 

On Monday, while still receiving Lidocaine, I was scheduled for to get Botox in my jaw. However, this required that my jaw be fully opened again, which of course dislocated it immediately seeing as it had only been two days since the ENT team had reset it Saturday. All of my doctors were expecting it to lock open but felt that the Botox was worth the shot, so the ENTs were waiting for me upstairs, after hours, to reset my jaw by the time I made it back to my room. Thankfully, this time I got to continue on the Lidocaine drip even with the Versed and Fentanyl, because my neurologist had already decided not to increase the Lidocaine dose any further.

The last four days of my stay I was quite miserable. I was placed on an “NPO” diet, meaning that I couldn’t eat or drink anything except for water. That didn’t really bother me because I couldn’t eat if I wanted to, my jaw was extremely painful, swollen, and continuing to spasm. My doctor explained my jaw situation to me in this way; “What happens when someone tears their ACL? They immobilize it, have surgery, and continue to keep it immobilized with no weight for several months. That’s what happened to your jaw. Except you just “tore your ACL” or dislocated your jaw three times in two weeks, and “had ACL surgery” or got your jaw reset three times in two weeks. The only difference being that your jaw isn’t immobilized.” After the first reset of my jaw I was told to expect a three month recovery, three months before I could eat normally again or not have pain and movement issues. Three months is now nine months. I was thankful for the ACL comparison because that made me feel less like a baby, and it also gave me a good way to explain the ordeal to others in a way they may better understand.

The best part of hospital stays is having visitors. This time I actually remembered most of them, even better! My sweet best friend came and spent several hours every. single. day. She sat in bed with me and didn’t say a word when I needed to cry because I hurt, she kept my ming off things playing UNO and Hangman for hours, she communicated for me when I couldn’t do so for myself and she stayed the night with me when she knew my parents needed a little break. I wouldn’t be doing as well as I am today if she weren’t around this time. My other friend came on several of her lunch breaks, friends surprised me and some came after work. The social support continues to blow my mind. I’m so so thankful.

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I got to go leave the hospital on May 20th, ten days after being admitted. I left with my head pain at a level 7 out 10. The Lidocaine had kept my headache level at a seven for about three days in a row, this was something my family, Dr. Cheesy and I celebrated! We all knew this was a big step for me. Unfortunately to consider the Lidocaine infusions successful,  I would’ve had to walk out of the hospital with a level 1 or lower headache. I was super bummed that didn’t happen and I’m having to cross of yet another treatment. But I got to try it! So at least now I know! I’m very fortunate to have access to these treatments and very thankful for this amazing new doctor. Until Dr. Cheesy can say that I am “stable”, he is having weekly appointments with me. WEEKLY. It’s amazing. Every week we get to talk things over with him, switch any medications around that we may need to, and discuss the next plan of action. Though I have been super bummed that I haven’t been doing great, I have been living off of IM shots and other rescues, I now even have to wear a pain patch, I haven’t been in the hospital for ONE MONTH. I couldn’t be more excited about that!!!! I’m still on a mostly liquid diet. I think I’ve tried a baked potato from every single restaurant around. lol and I have to carefully plan my days and my shots. But Dr. Cheesy has kept me out of the hospital for FOUR WEEKS, and that is four weeks longer than any other doctor has been able to do for a year now!!!!

This is such a long post that continues to ramble on and on but I needed to get this way overdue update posted!

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