nine.twenty-eight. twenty-sixteen.

Friends! I’ve missed you all! I’ve been absent for three months and some change, at this point. That’s practically years in blogging time. I feel terribly about it. Now, that doesn’t mean it has been months, or even weeks, since I last worked on a post. For me, and others passionate about writing, I cannot publicly publish a piece that I’m not happy with. It’s the very same as an artist being unwilling to turn in an incomplete piece of work. When writing there isn’t some formula you can follow that creates a “correct” post in the end, no one else can help make the words flow just right. Writing is a creative process and again, like artists, sometimes a wall gets built up that keeps your creativity from flowing. Writing is also an emotional process. No matter if you’re writing something fictional and having to give a person built only with words an entire personality, or if you’re writing something very real that is putting raw depictions out for all to read. Behind each piece, within each piece, lies so much emotion.

So, this is where I stand; I sit down at my computer at least once a week adding to, or creating a completely new piece, I don’t like how it comes together or feel as if anyone reading it could feel that my heart isn’t in it, I collect ideas that others give me and try so hard to write something within the realm of their brainstorm, I send pieces to my closest friends or other bloggers asking their opinions, I set a deadline for myself, I get frustrated, slam my computer shut, miss the deadline, and feel even more frustrated. I’ve come to realize the amount of pressure I feel to get a post out every so often. But why? No one has ever pressured me to write these blogs, no one has given me negative input. I’ve never felt this pressure before, because the source of this tension is me.

At first I was okay with taking a mini break, I knew my mind needed it. It can be so hard to talk about the bad days and the ugly details. When I share those with you guys it means I have to, kind of, go through them again. Though I may not be physically going through each attack or situation again, emotionally I have to in order to share the truth. That in turn means I feel the mental exhaustion all over again, on top of the current, steady, mental and physical exhaustion I always carry. Again, no one asked me to do this to myself. No one asked me to continuously share my life so vividly through this outlet. I do it, and will continue to do so, because I love the support, interest, knowledge and relationships that have sparked from this platform I have created. The time put into this site wouldn’t be worth much if I didn’t keep it real, raw, and unedited.

My mini break has somehow turned into a very extended break. But to be honest, I feel refreshed. Forcing myself to write because I need to, not because I want to isn’t real, raw or honest. Through all of this time I have continued to have conversation with those who reach out and even speak with/participate in a research study being done for Hemiplegic Migraines!! This is a huge step. In the three months off I’ve made good friends with a fellow spoonie. Though she lives countries away from me, we chat almost daily. This is why I blog.

While all above is true, I’m also very excited to share many of my good days and positive changes that I’ve made strides towards recently! Thank you for being understanding and supportive. This officially means I AM BACK! Now you guys can hold me to it 😉

I’ve missed you all!

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.

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.

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.

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!

Started with NO. Now YES with hope.

Hey guys! Before I even start the post I need to say a huge THANK YOU to the so many people that have sent cards, flowers, gifts and all my Hallsville peeps that wore #teamhadley shirts or purple for me. Plus every awesome visitor I’ve had wether I was awake to see you or not 😉 Support like that is what gets you through things like this.THANK YOU.

When I first knew I was going to write this blog I thought it was going to about the following things; The fear of not knowing what to do. The frustration of self-worth from one ER doctor, even with multiple doctor notes and go aheads from many different doctors, of all sorts. The pain, me ranking a level 9 which is hard for me to do as I won’t say level 10 pain. I sat in that emergency room for 9 hours without relief, crying. Which continued to leaving my dad more and more frustrated and incredibly helpless as “he watched his baby girl crying for hours.”

The Neurology resident was trying to work so hard for and with us, looking back at it now, probably also doing way more behind the scenes than we were even aware of. We were all of the emotionally examples mentioned above, plus I reallyy needed the pain of my jaw being locked open to be taken care of. By the time the Neuro resident got me officially admitted to their floor, where they could make all the calls, only the night shift was around, which tends to make things even slower. I didn’t sleep an hour that night, the nurses rounded hourly and my nurse noted that I was awake every single time. The next morning a whole flood of neurologists and their Attending plus my doctor, Dr. Cheesy we’ll call him, everyone wanting to know a different question and have me move this eye or wiggle this finger. Dr. Cheesy felt that the better solution would be to leave me symptomatic and run some tests towards my jaw first. At this point my jaw had been locked open for around 24 hours, without food, drink or anything. They put a NG tube in that morning and I spent my day getting numerous tests, many that I’d not had done before. A NG tube goes through your nose down into your stomach, little did I know for the next seven days that would essentially be the source of all my nutrition

48 hours. My jaw had now been locked for 48 hours. Dr. Cheesy stops by to let me know he learned what he needed to from all of yesterday’s testing and he and the rounding Neuro Attending had agreed to send me to ICU where I could be closely monitored while given a lot of medication. One of the neurology doctors mentioned that by jaw my be dislocated but didn’t tell us that was for sure or not. I arrived in ICU, shocking everyone at my young age. They started hooking me up to everything. Next time you go to a hospital room check out how many plugs and switches there are, then double it in the ICU. They gave me medication and my jaw still wouldn’t unlock. I’m pretty sure I finally let myself get all upset about it that night buut I also don’t remember all of that day perfectly.

72 hours. I was plain miserable. My whole family was. We’d been living extra on our toes for three days and still nothing had worked. The ENT team let us know that my jaw was dislocated and they would perform the procedure to correct it under conscious sedation. This is where I loose basically all memory for a number of days. I know my whole family was there, I’m not sure if I know my brothers were there through remembering them or being a told a funny story of their time there. I know Kelsey walked in and held my hand, which made me cry because I knew she wasn’t done with school yet.I know I cried a lot. And apparently I asked for the whole family to cram in for a selfie, I’ve still yet to see the picture.

But really this is where things got serious, for the next 10 days, they were messing with my medications so much and my body needed to heal too, I guess, I don’t hardly have a memory of any those days. The testing is previous days paid off giving me a diagnosis of dystonia of the jaw. Dystonia has many different names, depending on the part of your body that it affects. It can be the disease that you suffer from, or, more commonly they said, is a symptom of another disease. Making the questioned spasming and locking of my jaw, diagnosed as a type of dystonia, still a symptom of my HM. This is all so much more than a migraine. Something new to learn about! Because of this tightness and the re-setting of my jaw for the following days my doctors kept me extra-heavily medicated in attempt to calm those areas down for an extended period of time. Those were the scariest days for my parents. I just spent most of my time sleeping and not moving an inch. I don’t know when I left ICU and went down to PCU. I actually don’t remember waking up in the Progressive Care Unit for a first time.One of my parents stayed with me and met with the doctor every day then made it back to work and left me with grandparents for a few hours.  There were scary times, when I didn’t know my birthday or who my dad was or couldn’t walk myself around the halls. My sweet brother came to visit me on prom, which I kind of remember but am so thankful he did for me. I had to learn how I was going to eat things at for while without being to open my mouth much which is how to syringe-thingy came about and my mom had wayy too much fun with it. I hear I had a steady stream of visitors, I wish I was awake and aware enough to talk to or remember everyone. I remember some quicks hi’s when it turns out I slept and they were there for a long time. But Chris, I ate that quesadilla as promised.

Parker: best picture ever! Hadley: Just finds in camera roll.

Mom was pretty excited to try feeding me applesauce towards the end stretch!

The point is the pain, fear, frustration and helplessness that we walked in the doors with, instead of just being said no to, it was passed on. New eyes looked at it. Dr. Cheesy and other Neurologists, other doctors, picked their brains. What was created was a wonderful line of communication, new ideas, Hope.

We have Hope on our minds and say peace out PCU nurses, we’ll miss you!

 

 

#28 “It’s Real.”

To those who make us feel doubted, lonely, crazy, devastated, pathetic, and embarrassed,

We have something to tell you. We consist of the people you have let down. We are the patient that “just has headaches”, not the next that has something serious. We are the patient that does not fit your checklist, so of course we are crazy. We are the patient you checked your watch and walked out on after 15 minutes, while we were in mid-sentence, because you had your next client. We are the client that’s symptoms just “don’t line up”? That is us. The American Migraine Foundation knows us as the 36 million migraine sufferers in the United States, that is over 10% of our population. We are the 90% of chronic migrainers unable to work on some level. The 14 million U.S. sufferers of chronic daily migraine, they are our peers. We are the ONE in every ten thousandth person to have Hemiplegic Migraines, familial or sporadic. And it is our turn to talk.

The Mighty recently started a conversation via Facebook. This hot topic quickly received the input of 494 migrainers. The question? “To our readers who live with migraines, what do you wish people could grasp about this debilitating and often invisible condition?” The status immediately had hundreds of people, all commonly in pain, describing their biggest insecurity linked to their disease or bad health. I quickly read the polished article with a carefully picked 15 comments we wish everyone could understand. I know I, and so many others, appreciated the honest depiction of something so commonly dismissed.

So, Dr. Big Wig, mean “friends”, gossip greedy townies, and family that refusing to understand; the top five answers are what we usually want to slap in your face.

1. “It’s not just a headache.” Stephanie Richards
2. “Chronic Migraines are on a totally different level than the occasional migraine. You end up living in fear of when the next one will hit.” – Joey Caylor Spencer 
3. “It’s not something I can control, and it’s not my fault.” – Sara Byk
4. “When I know it’s coming, I get desperate for anything that will stop it.” – Melissa Goodman 
5. “Excedrin Migraine is a complete waste of time if you have an actual migraine. And yes, three days later, I’m still on the same migraine. And no, I can’t just tough it out.” – Jen Briggs 

It’s still weird to me when I read a comment from a person states, or countries, away from me and they are describing my attacks to a perfect T. That’s how much we struggle. It takes just one physically incapacitating day to wreck our emotional well-being, leaving us miserable, in pain, and feeling lonely. Until we read again comments of those in the same place as we are, that is when we can grasp some sanity and mental relief. Surely I’ll adjust at some point and not keep getting impressed by someone understanding me. Is this just me? lol

I clicked the link that brought me to the Facebook original post and an impressive amount of comments to read through. Every time I read “put your own thoughts here” chats within my support groups, especially my HM group, I get this odd hollow cringe feeling deep in my stomach. It’s like I’m nervous, hoping to find others to relate to, but also feeling guilty that I’m hoping for someone else to have these scary experiences. Silly, yes, I know. Reading each of those comments, so many hitting too close to home, I kick myself for letting it make me emotional. However, it never fails to get me a little each time. Though it made me so close to tearing up(…maybe I did), post after post exposing some of our hardest insecurities was amazing to read. Discussions with fellow migrainers= story comparisons, doctor references, success stories, and learning more. Even though it took me a million screen shots to pick just five favorites, I finally did so. I felt like these people’s comments even went with a tone similar to my own…

1. “They are the worst. Anyone who says different has never experienced a migraine where it feels like your head is about to split open and some alien is going to pop out.” -unknown
2. “Even light and air hurt. “My skin feels like somebody sand papered it. It’s not something one can just snap out of.” – Theresa Belcourt
3. “If you tell me to take excedrin one more time I’m going to pull my hair out…after I finish getting sick and crying.” – Ambra King
4. “I’m not faking when I still go to work or try to be productive. I still have to try to live my life, even though I have a chronic condition.” – Trina Theisen
5. “Complicated(usually hemiplegic) and debilitating lasting two days w/o abortive treatment. My MDs prepare me with abortives to prevent ER trips. However, sometimes the pain and symptoms can be as severe as a craniotomy w/ cortical resection. And dehydration can be severe.” –FB comment   *although this isn’t worded the best, and I have no idea what a cortical resection means, The point is still direct to HM*
6. “It’s different for everyone. So your sisters cousins uncle’s ex fiancé that had them, they ARE NOT the same as mine.” – Kim Robinson

The honest emotional support is vital to all of us. But we are also always craving new information and the latest updates. It’s nice to have people to pass around conversation for those little knowledge points, too. We are always learning more. We could bet all of you know-it-alls and doctorates with who knows more about our condition, or migraines in general and we’ll win every time.

Sincerely,

Those of us who are tough, brave, fighters and migraine know-it-alls.

Check out The Mighty’s article here👇🏼

http://themighty.com/2016/03/what-migraines-really-feel-like-from-people-who-get-them/

YES finds a way.

A couple of months ago the way my mom and I were treated at a local hospital, one that we depended on and begged for answers, was absolutely NOT okay. I applaud my mother for keeping her composure that night as we sat fearful, confused and angry. I mean angry. I have used explicit detail to describe some horrible experiences to many of you, yet that night was the most scared I have been in my entire health journey. We needed help. I needed help. But instead it felt like we were being suffocated by health system politics and the poisonous words of one doctor. Though I wish I could call that business and each person involved out for everyone else to gawk at, I knew that wasn’t purposeful. Instead, I waited until I could write this post with a positive light to be shined on it. Never did I think two months later I would have such a positive post to write that I knew I couldn’t cram every awesome detail in. But, here I sit.

Walking into the University of Missouri hospital in the middle of night, deep into an attack, with so many unknowns and even more emotions wasn’t something my mom or I felt like we could tackle that night. The second we walked in the door, my aunt, who normally works weekend nights and it was Tuesday, was sitting in triage. I happened to glance that direction trying to get a feel for the new place I would probably be getting to know quite well. I did the quickest double take ever when I saw Shelly, who immediately pulled me back and began the triage process without question of what brought us there. I was quickly assigned a nurse and doctor. As we waited for the doctor to come in my mom and I looked at each other, communicating the deepest hate for this process without having to speak. My sweet doctor came in and immediately reminded me of Grey’s Anatomy doctor Arizona. ❤  As we talked she took a second to stop and say, “Honey, why did you wait so long to come in?” With responses from my mom and I like, ohh if you even knew and big sighs she ended with, “People come in here for the silliest things. This is not silly. Don’t wait so long next time.” My mom called my grandma back crying, an hour before she had called her out of question, this time all she had to say was, “They listened”.We didn’t have to tackle anything that night, we just had to tell our story and instead, they tackled it.

Two trips later, the receponist checking people in didn’t ask why I was there, instead said, “Hemiplegic Migraines, right? You don’t forget a teenager who looks like they’re having a stroke.” Again, we were shocked at the level of care. That night on-call neurology visited me. Who ever woulda thought to call neuro down for a neuro patient in the ER, huh? Lol. The neurologist and his attending, who I couldn’t take seriously thanks to my brother’s new persona, Raj, both examined me concluding that yes I was most definitely weak and suffering from a Hemiplegic Migraines. They also noted the swelling of the right side of my face. In fact, all the doctors wether PA or attending that came into contact with me examined me. Ground breaking. Worries of my high heart rate were spread, and after the third person came in to make sure I wasn’t keeled over with chest pain and my heart rate was indeed that high, my mom asked what a HR should be. The answer? Under 100. Mine? Sitting pretty in the 150-160’s. That trip was a long one and the list of attempted medications was quickly growing to match in length. I pleaded my apologies to my nurse as I was so frustrated that my medical team kept trying and my body just would not give in. My nurse responded with, “Why are you apologizing? I’m sorry we haven’t helped you yet.” Tears. I was admitted that night in hopes of more recovery where they could continue to monitor me and help me. It had been a long night so my aunt swung by to check on me and offer some humor, everyone thought my dad was my significant other. Why does that ALWAYS happen in hospitals?😂  I was given steroids every six hours to help the swelling. My old neurologist once looked at my swollen face, and after swearing to him I wasn’t self harming, concluded, “Your muscles are probably just fatter on that side.” I kid you not.

Every time we’re forced to make that trip we cringe at the gamble it is. But really, so far, these people haven’t made it a gamble. I’m treated like a human being in crazy unfair pain. I told my last doctor, “unfortunately I come in here a lot.” She said, “Well I completely understand why you do.” I’m not used to my vitals being monitored and taken seriously, so seeing how high my heart rate and blood pressure can get each time is eye opening, and also probably means that that has been the case for awhile. Unfortunately, the “other guys” would just turn the vitals machine off when it sounded, or better yet not hook me up at all.

I seriously have a note saved on my phone with quotes of how these doctors and nurses treat me, mostly because we’re just waiting for the other shoe to drop. I wish making a blog with quotes from my old doctor compared to quotes from my ongoing experiences was acceptable, or I wish I could just pack this post even more full of examples of the care I am receiving. It feels like a whole new system. I’m also thankful to have had my aunt advocating for me for so long, more than I ever knew. I come into contact with ER staff that has heard stories about this for awhile, so they know I’m not just really good at faking. I never thought I’d be posting about such excellent local care, I just pray that it continues. The University of Missouri Health Care slogan reads, “Where YES finds a way.” and my goodness have they achieved that.

I have an appointment coming up in about a week, so cross your fingers, eyes and toes!!!!!

Rare Disease Awareness Day 2016🤒🤕😷

Each year, the last day of February represents the only day of the year rare diseases are recognized.  With nearly 20 million Americans living with a rare disease, you probably know someone fighting one of these battles, yet their day won’t get half the recognition that national Margarita Day or Pet Day gets. Each of us unfortunate enough to know the importance of this day would much rather celebrate Kiss and Make-Up Day, August 25th, or National Chocolate Covered Anything Day, December 16th. It’s still awkward for me to claim importance to a title with the words “Rare” and “Disease”, but it’s important so I’m going for it.

That being said, of the close to 7,000 rare diseases listed, I could have it so much worse. My life isn’t on the line and just glancing at me, most days, you can’t tell I’m sick. The invisible part of this illness is both a blessing and a curse. I’m still trying to find a way to bring positive attention, conversation and knowledge to the topic without it having to bring so much sick spotlight attention back on me, does that make any sense? Lol. Being sick has affected me in every way possible. I can find both positives and negatives, it’s proven to be productive and counterproductive all at once, while simultaneously dragging me down the roughest years of my life that I’ve somehow also turned into the years I learned most about myself. It’s most definitely a unique experience, but I don’t think I could go as far as to say that I wouldn’t trade it for the world.

So, as I was brainstorming ideas for how to recognize February 29th this year, I googled Rare Disease Awareness Day 2016. The theme, if you will, just so happens to be about including all the people a disease affects, not just the person who is sick. Perfect! I immediately had an idea for a video and started scouting people out for help. I came up with five questions and asked some of my people to awkwardly let me record them answering them. Since they all rock, I got both my brothers, my mom, two best friends, and a family friend all talked into participating in the video. Score! I told everyone to be as un-rehearsed as possible and I was really looking forward to hearing all the different interpretations of each question.

They haven’t seen it yet, so ready or not, go watch!

 

Hey medical community, did ya catch our drift? 😉🙄

Abnormal Psychology

I opened my Psychology textbook a couple weeks ago to read about Biopsychology, Neuroscience and Human Nature. I had to write a paper for my abnormal psych class about sympathetic division and parasympathetic division, basically our bodies’ fight-or-flight responses. However, instead of taking an hour to read that specific section and write my paper, I spent my time reading the entire chapter. The intro paragraph to the chapter gave me chills as I scanned over it. You could’ve been fooled into thinking the textbook wrote about the first day I had an attack, using nearly exact depictions I have used before.

The textbook wrote; “Then, on a cold December morning, Dr. Jill Bolte Taylor’s life abruptly changed. When Jill first awoke that fateful day, she noticed a painful pounding in her head that felt like a severe headache. As she tried to go about her normal morning routine, however, she began to notice odd changes in her body and mind. Stepping into the shower became a focused effort in coordination. Her body felt strange; the sound of water was a deafening roar, and the overhead light seared her eyes. Jill could hear her family’s voices, each syllable like a pen drop, but was not able to respond no matter how hard she tried. As she tried to think rationally and figure out what was happening, she couldn’t keep her thoughts on track and felt two steps behind. …”

I wrote in a past blog; “October 26th, 2012, I was a sophomore in high school. I woke up that Friday morning in a weird daze, like I was two steps behind everyone else. Headaches were not a new thing for me, but that day it was a headache like never before. I was not myself. I chalked it up to cheering in the rain and not eating well the night before. I figured my asthma was acting up and I was on the verge of being sick, nothing a weekend of rest couldn’t kick. In second hour, Señora Johnson asked me my favorite sport to play. I was to respond, in Spanish. But I couldn’t. I remember the feeling like it was yesterday. You know in cartoons when someone’s talking but the person listening feels like it’s far away or out of focus? That’s exactly how I felt. It was like I could hear each letter of what she was saying but I physically could not respond. She gave me an awkward, like, two minutes to respond. About a minute after I couldn’t come up with a response, and a friend jumped in to save me, I passed out for the first time…”

Dr Jill, had a stroke that day. She was taken to the hospital, tested, scanned, diagnosed and treated. She still spent 3-4 months returning to her normal self, but says she can remember the feeling of that morning like it was yesterday. I too remember the moment like it was yesterday except, I was not tested or scanned(at first), I was shown how constipation was the answer, instead. I can’t help but wonder what changed that day. Or what could’ve been different over the next few years if I had had tests run that first ER trip. It’s scary how much could potentially slide through the cracks based on one doctor’s opinion. What if I’d been having a real stroke? That’s where my essay prompt about doctors having a God complex came in. Yeah, I had fun with that one.

Learning about the brain works and all things psychology is my favorite. If I could be a real life Criminal Minds team member, I would do it in heart beat. But it is kinda weird having discussions about things that hit close to home. After having discussions, reading the above, and writing two essays; one about doctor’s God complex and the other about the sympathetic nervous system I was loving my psychology class. Then, last week, I had an appointment with a pain management doctor. He talked with my mom and I for probably an hour before we began discussing possible ways he could help. I really liked the doctor and appreciated that he was aware how serious and complex my case was. Dr. M presented the idea of a nerve block. But he happened to start explaining the works of the sympathetic nervous system! It was so cool to be able to have knowledge of what he was discussing and all the things this system does for our bodies. 

The next day, Dr. M set me up for a Stellate Ganglion Nerve Block. The procedure is performed by putting a needle right into your neck. Lovely, right? Actually, it wasn’t as bad as I thought. I had made myself nice and anxious about it, until I realized the picture I had come up with in my head was of an actual meat thermometer being jabbed into my carotid. Probably another nod to Criminal Minds, there. The hope of the SG block is that it helps my jaw and the major right-sided swelling that this doctor found. Unfortunately, we know it won’t help the root of the problem, HM directly, but maybe these few pieces of it. Any-who, with zero local anesthetic, the doc went for it. I knew he was successfully in the middle of my nerve when I got instant make-you-sick-pain. All in all the whole procedure was pretty short and sweet. The nurses were fantastic, but underestimated my experience as they were sure to explain that a X-Ray would not hurt, and just took pictures. When the X-Ray picture popped up on the screen, two nurses started whispering, worried about something in my vein. It was actually just my Port-a-cath line that you could see plain as day, which I thought was awesome! We have yet to see ground breaking results but are hopeful that with a few more blocks we will soon. I go back in this Friday!

Here just shows the site in relation to my port. Site of block is just bruising, slightly.

Watch my Week!

This week I decided to try something totally different! I recorded details of my week to show to my specialist I get to see very soon. My mom suggested I turn it into a blog post. My aunt, who also suffers a chronic, invisible disease, agreed that sometimes you have to see it to believe it. I tried taking a video clip from each day this week, without making it an hour long but still getting an idea of things. It’s still quite long, but I wanted to get the point across, so please hang in there! I hope this gives everyone a more accurate depiction of the way attacks come about and the serious toll they take on my body, I wish I could’ve included more. Every time I compare pictures from bad day to post IV, I myself am still blown away. Not all the pictures are pretty and though I only added two clips on my worst days, they’re plenty bad. I wish I would’ve gotten a bit more of the final two days recored, but they were the worst two for a reason.

Each attack differs a bit, sometimes vomiting affecting me more while other times the seizures and so on. This attack’s worst part was the pain. Yes, it’s always painful, but it got extra bad this week. I’m so thankful my ER has been working well with me recently, but I am more than ready to visit my doctor and work out some new options. The first picture below was taken in the ER while waiting on a round of medications, the second was taken right when I got home from the ER.

(yes, this is one of those annoying videos you have to turn the volume up and down on.)

 

On a final note, since I’m letting the video do must of the talking this time, I want to say THANK YOU to all the people who have shown interested and ordered the shirts I have shared. I have been so excited and surprised by the amount of people ordering to support me. You all rock!

http://www.booster.com/dashboard/campaigns/2832722?status=

 

Hadley; noun

Sitting down to pump out a blog I will actually publish feels good after taking a three week break. I appreciate everybody asking if they’ve missed my latest one or wondering where I’ve been. It’s been a rough go lately and I decided to take a bit of a break from posting. Over the last three weeks I’ve written several pieces, but after reading over them they felt like negative whiny run-ons. I also just simply wasn’t motivated to share all of the bad stuff swirling around in Hadley world. Blogging is something I’ve come to love, but sometimes it’s still a bit hard to share such personal things. Sharing descriptions of such unattractive insecurities just wasn’t something I could bring myself to do while I was in a negative spot week. BUT! I’ve taken my time, and I’m glad to be back on the horse. Don’t worry, this doesn’t take away from the honest, raw feelings put out here. 

While putting everything out there is necessary if I want to blog about my health, it can also be tough to find the line of sharing what needs to be shared, what details I want to share, and what’s right to keep private. Putting descriptions about paralysis, lockjaw, seizures and hospitals is simply unattractive. I’m not saying I need everyone telling me I’m super hot or anything surface level, really. But to have such detailed depictions of incidents that intimidate and turn me off, means that many more of the details I share probably do that much more to many more people. I’m not sure when infusion appointments became what I looked forward to, or when I started celebrating the taste of saline. At some point I became an expert in medical phrases and able to rattle off lists and purposes of medications. I’m 19 years old, but the shots I celebrate consist of needles and Benadryl. Those just aren’t things that my peers can relate to. It’s been tough for me lately, to worry that everyone I talk to will only be able to see me as HM Hadley.

I’m not sure why it’s been such a recent insecurity for me, or if it’s just one that I’m finally mentally ready to tackle. I make the effort to get up, actually blow dry my hair, do my hair, and get dressed every day that I can leaving the house or not, something I never felt the need to do before. I’ve taken the time to actually put makeup on to go into town if I’m not feeling badly, or to keep my nails painted. Honestly, I’m not sure if these are positives, because a few years ago I always accomplished all of these things, or if it’s the insecurities taking over. Feeling such a prominent insecurity is kind of uncharted waters for me. Don’t get me wrong, of course I have had all the same lows teenage girls go through, but overall I’ve always been pretty confident in myself.

I think I worry fewer and fewer people will get to know, or want to get to know, the real Hadley. To be perfectly honest, it’s something that I’m getting to know all over again. But I am SO excited about that and I want others to be also, I guess. See, the newfound insecurity is even coming through in this post, at least I caught it, because I’ve added “I think” to so many sentences like I need to justify my thoughts. I suppose the moral of my rambles here is this; I lost myself for a long time. And in getting back to myself, I’ve gotten so far that I’m able to face lows and insecurities that have probably been here the whole time. As much as that scares me to death, that also makes me want to pat myself on the back. I love this blog, I love the support this blog has brought me personally, and even more-so the support to others I will never meet, but I don’t want anyone else to lose Hadley.

😉

I hope this reached some level of making sense.