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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Posted in #teamhadley, Beating Hemiplegic Migraine, Chronic Migraine, Daily Migraine, Health Blog, Hemiplegic Migraine, Just Keep Keepin On, MU Health Care, port, portacath, Today I Win, Uncategorized, University ER, University of Missouri Health Care

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

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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.

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

 

 

Posted in Chronic Migraine, Daily Migraine, Hemiplegic Migraine, Seizures

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.

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I hope this reached some level of making sense.

Posted in Beating Hemiplegic Migraine, Hemiplegic Migraine

Anniversary or Un-iversary?

Three years. 36 months. One thousand, ninety five days. Three grades. The cliche “time feels like it has flown by and not moved at at once” has never rung so true. October 26, 2012 I had my first seizure and never looked back. Since that first day in Spanish class, I can count on my fingers the number of seizure or attack free days that I have had. In so many ways I can’t convince myself it’s possible that this all started three short years ago, on the other hand I cannot believe I just used the term, “three short years ago”. It’s really odd to think back on that day, no memory of mine is so pristine. Waking up that Friday morning I felt awful but attributed that to having cheered in the rainy district game the night before, eating/sleeping poorly, and a fall allergy asthma attack. When Sean greeted me that morning, he said “Whoa, not feeling too hot?” Third hour I let him know I had passed out, he texted back “Atta girl!” These are perfect examples as to life before seizures. Before seizures became the norm, telling someone I passed out carried the assumption I just fell asleep at a bad time, commenting on the unexpected meant me looking like I got it by a truck, now the unexpected is me not looking like a character from The Walking Dead. My first trip into the ER, ever, came that Sunday after a second episode. The ER doctor didn’t run a single blood test or scan, instead he came in and racked it up to constipation. The guy literally squeezed as if he were extremely constipated and my dad literally laughed like this guy was an actual doctor. Funny enough he is now an ER doctor that I would prefer over some.

That whole first week I was so sick my everything was exhausted and I had pain deep in my bones. Many people suggested I get tested for mono, that never happened but I now wish we would’ve pushed harder for that. There are some recent understandings that a mutated strand of Mono can cause Sporadic Hemiplegic Migraine. That being said, when we consider the week before, at my aunt’s wedding, everyone asked if I was sick, at the time I didn’t think I was but six days later…    just something more to ponder😉

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A lot has changed in the last year, I would say more than before but I’m pretty sure I said that last year. lol. We’ve learned just how hard it is to live with a progressive disease. A significant dip in my cognitive function has been clear the past few months, at least in the memory department. I used to be able to recall the tiniest details for years, now I ask the same question over and over without noticing I’ve already gotten the answer. It’s so uncomfortable when I’m mid conversation with someone, like a nurse, and out of the blue I truly cannot recall a signal detail of the conversation, what I was going to say or what had just come out of my mouth. Days that happens I typically end up remembering zero of. But positively, I think I’ve grown most in my attitude. My understanding, learning, and mood have all changed significantly this year and I’m glad to say I’m confident that I have grown in that department.

Needless to say, when this all started we had no idea that we’d be wishing for 30 second pass-outs in the future. Three years ago, doctors told me I was dehydrated and stressed. Three years ago, my psych consult listened to all of my baggage and ultimately encouraged me to go back to the medical side of things. Two years ago, doctors labeled me just another teen girl with a conversion disorder and swore in 6-12months, psych would have me healed. Two years ago, well that psych consult was bad on my end. 😯But, she saw through my frustration and still told us to go back to the medical side. One year ago, doctors comforted me and promised to know “Hadley”, not just be another doctor unable to pick me out of a line up. One year ago, the psych PA ditched the consult out of shock that doctors had played hot potato with me like that, while the Dr applauded my ability to self advocate and be so knowledgable. I now wish my previous physicians would’ve bet their medical licenses on me being magically healed way back when.

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This is another video contest prompt; “Show us your fight with HM this year” I think it was the perfect thing to get together, a video is the only way to truly show my special support over the year. Going through the pictures and videos made me a tad emotional, of course. I often am disappointed in myself for not being able to solve my own problems. Then again, I’m impressed that I get up and do life on some of the days I do. I never knew a blog would require me to take so many more selfies😂 That being said, the selfies themselves were a reminder that I’m not fighting for my life and to be thankful I’m able to get available treatments. There’s always someone out there who has it worse than you. 👇🏼

https://www.youtube.com/watch?v=Oj8d1FPT7kw

My editing skills are still in the learning process. Winners of this contest get rewarded medical bill scholarships.

So thank YOU, for reading this blog, for taking the time to send an encouraging comment, for going out of your way to come chat with me, for checking on my parents and brother because they’re living this too. And thanks for those of you who have taken it upon yourself to follow IHMF updates and want to learn. I can’t wait to read this post next year and laugh at what I’m good at then, and see what I need to get back to. Always learning!!!


What I’ve gotten myself into this year:

  • 5 Chicago Trips
  • 50 days inpatient in Chicago
  • PICC line placement
  • Port-a-cath surgery
  • At least 20 IVs…probably way more
  • ER trips…uhh I can’t count that high.
  • 31 Infusion treatments
  • 5 ultrasounds
  • 2 MRIs
  • 4 CT scans
  • 2 MRA scans
  • 6 EKGs
  • Endoscopy
  • Botox
  • Diamond Headache Clinic
  • Mayo Clini- Rochester

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On one last note, if you are interested in purchasing a shirt, all funds raised from this shirt will go directly to Hemiplegic Migraine research and trials to be done in the United States.

Includes 3 styles with a black, grey, or white option for each.
Includes 3 styles with a black, grey, or white option for each.

Order Here!👇🏼

https://www.customink.com/g/hrr0-00aa-k9cq