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.

 

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.

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​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?

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.

 

 

 

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😉

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.

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

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.

Order Here!👇🏼

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

October 9th. One Year.

One year ago today, October 9th I was diagnosed with Sporadic Hemiplegic Migraine(SHM). SHM is one of two types of a rare neurological disease, caused by a gene mutation. Familial Hemiplegic Migraine(FHM) and Sporadic Hemiplegic Migraine affect only 3% of our population, world-wide. Sufferers of both SHM and FHM present with stroke-like symptoms, visual disturbances, memory loss and more. Severe attacks may leave people with prolonged hemiplegia and seizures, these are the attacks I suffer from most. 

Want to learn more? Check these out!👇🏼
https://rarediseases.info.nih.gov/gard/10768/hemiplegic-migraine/resources/1
http://ghr.nlm.nih.gov/condition/sporadic-hemiplegic-migraine

In the last year I have found peace with having fought two years for a diagnosis. I’ve been grateful to have found the HM community to lean on and learn from. We’ve found comfort in Hemiplegic Migraines, in the most odd and unfortunate way. We sure have learned a lot this year! 

This is a post I shared on my original blog, the one I kept a secret😉, the day I got to go home after those initial 15 days in the hospital.

After being poked and prodded, scanned, tested and asked uncomfortable questions, 8 rounds of blood tests, two IV, one IV infection, one IV knocked into a nerve, 11 shots in my butt and one everyday in my stomach, my first “surgical procedure” getting my PICC line, my second procedure getting my endoscopy, 3 ultrasounds, a couple of hours worth of scans, getting woken up 5 times a night orrrr not sleeping at all, getting infusions around the clock, having good days and bad, and staying in the hospital 14 nights…….I’m happy to say how worth it all of that was. As my “anniversary” rolls around again, soon, it’s nice to at least feel knowledgeable and not so shocked or in denial. It’s chronic, so it’s something I’m stuck with. In typical Hadley fashion, it’s amongst the most rare so it doesn’t come with a treatment locked and loaded. We’re happy to be doing what we can and letting my body breathe a little after so many heavy drugs is best for now.”

 

I’d say some things have changed in the last 365 days.

1. Two IV’s is for wimps💁🏼
2. Talking about getting shots in your butt doesn’t ever stop getting awkward. No matter how you put it. No matter how many times.                                                                                                                                                                                         🙋🏼My dad gives me shots in my butt.                                                                                                                                             🙈See. Still awkward.

3) PICC lines and edocscopys are hardly surgical procedures. 

4) I hope my writings I share aren’t so whiny!!

5)….I was serious about heavy drugs. I don’t remember writing this and couldn’t tell you these details otherwise. Seriously.😂

Willis Tower in Chicago!

 

Visiting “the bean”…what I wanted to see most but have no memory of. Lol

    

 Fun night in the city with my momma the night before 🙂

Hard Rock Cafe!!

  

 

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.

Order Here!

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

Mind Blown.

I’ve mentioned in past blogs the dramatic lock-jaw symptom I dealt with all summer. Typically, lock jaw means the sufferers’ jaw is locked closed and they cannot physically open it. I’m special and have what I think is the even worse side of that. When my mouth pulls to the right of my face it usually means my jaw is close to locking…open. That means I cannot eat, take oral medications, drink or sleep when the ordeal begins. My jaw quickly began to lock itself open more often than before, and the hardest part is that we have yet to be able to break the cycle on our own. This has earned me countless, almost weekly, ER trips. The last thing I want to do when I don’t feel good, or ever, is deal with the criticizing ER staff and loud, florescent lit department. However, lock-jaw is so painful I usually give in to ER rescues more quickly than normal. We’ve tried waiting hours and even days before hitting the hospital, hoping my home rescues could eventually calm my jaw. On the other hand, we’ve tried going straight to the emergency room because we know that route works and it means we don’t have to pump so many unsuccessful meds into me at home. Long story short, it is one of, if not the most painful symptoms I struggle with frequently.

Tonight, I was scrolling through Facebook when a post from my Hemiplegic Migraine support group literally stopped me in my tracks. “Asking for some advice…I’ve been in a cycle for 6 days now…where hm comes and goes…but now my jaw with has completely locked up…anyone else have this??? And what have u done” WHAT. I’ve been trying to track these attacks for months, looking for any conclusion that would make this odd symptom make sense. Both of my neurologists have spent time witnessing an attack in person, watching videos or pictures of attacks, working on treatments and trying to come up with some type of explanation. Now, I’m reading yet another post leaving me mind blown of the to-the-T description given by multiple people all states or countries away from each other. How? Just, how?

The very first response started with, “Mine locked with my mouth open…”. Yet again, that uncomfortable feeling in my gut urged me to read everyone else’s comments. 15 comments followed, each full of unfortunate thankfulness that someone else understood the excruciating pain that isn’t possible to describe. Person after person typing about their personal horror stories caused by reverse-like lock jaw. Seven people shared their need for emergency room trips each time, and the “cocktail” they required was nearly the exact that I require. I immediately had tears in my eyes. How? Just, how?

I’ve said it before, and I’ll say it again, the feeling of someone finally understanding exactly what you can’t put into words is odd, simply put. Over and over again these strangers through a computer get me. I relate to those people and all of a sudden i’m taking a deep breath, I’m reassured that I am not alone and WE will all continue to conquer. I hate that reading about other people struggling through days just as I am is the most comforting part of all this. I hate even more that we’re made to feel alone and crazy to the point that we even begin second guessing ourselves. That being said, I am thankful to have a doctor that does back me up. Though Dr. Diamond didn’t have a straight answer for me about my jaw, she held my hand, looked me into the eye and said, “Hadley, you are not crazy. This is real. We’ve witnessed it. I’m sorry I don’t have an answer for you, but you are anything but crazy.” Do you know how many years I have begged for a doctor to tell me that? Three solid years. Nothing about HM is fair to any of us, but I am SO thankful to have a community to back me up, even if they’re behind a computer screen.

So, again I ask, how? How in the world does a disease ending in “migraine” make me hurt, make me vomit, make me confused, make me blind, make me have seizures, make my body stroke out, make my jaw lock? How? We are begging for answers. We are doing more than our fair share of research. We need answers. Until then, thank goodness for support groups. Until then, we will stay thankful that we are not the only person in the world fighting through this.

Something’s Gotta Give.

As everyone has gotten back into the swing of schedules and school life, I’ve picked up quality time with my sweet pup and online classes. All of my friends are officially moved away from htown and into their new “homes”. I’ve scrolled through everyone’s dorm pictures, good bye and thank you posts, and college life snap stories glad to see my friends each loving the path they chose. I’ll admit, it’s been a bit harder for me than I thought it would be. Watching all of them thrive having the time of their life makes me happy for them. But, that’s the problem, I’m just watching.

“But you look so good!” Thank you, but also know I don’t spam social media on my worst days.

Though I’ve never been at peace with the necessary decision to stick back at home and take online classes, I’d finally convinced myself it would be okay and I could attend Mizzou or Columbia College my sophomore year. Now, that seems more out of reach than ever. How am I supposed to obtain such a high energy, hands-on job like I would like in the medical field if I can’t even make it through the most low maintenance weeks at home?

This summer has been the hardest yet, which weighs heavy on me after the incredible Spring I had. I guess in some ways the day by day struggles I’ve fought with all summer are proving to all those people who sympathetically tell me they’re bummed I still had a bad summer that no, this wasn’t all going to go away after I graduated from the stress of high school. I wish the stress of high school was my only issue. I think it’s also been extra disappointing lately because, for the longest time, the doctors were all positive I was going to have grown out of this by now. Instead, I’m getting worse. The scary truth that HM is a progressive disease to be dealt with for the rest of my life has been proven these past few months. I feel like every morning I’m waking up with a new symptom.

It’s gotten to the point that I often have to plan my week around the days I’ll be best thanks to my infusions. Some of the scary symptoms I’ve seen discussed in my support group that I thanked God I didn’t have, have hit me like a pile of rocks since June. And I spent 14 days in the hospital in June, soo that’s saying something.

I had gotten used to seizing throughout the day and not feeling well. I knew there would be days a bad attack would hit and my body would drag. When my right eye began to droop it was a visual reminder and warning to get ready for the rough few days to follow. But as I was adjusting and still making it along, I was reading scary stories and recollections from others on the HM Support Group I am so active in. I sometimes physically wince when I read the description of paralysis and complete loss of speech. Unfortunately, some of the things I once gawked at, thinking there was no way I could possibly get that bad…it’s that bad.

About once a week has been the average timing of the wonderful new symptom lockjaw. Talk about painful. I guess mine is technically reverse-like lockjaw because my mouth gets stuck open. That means no drinking, no eating, no oral meds until I can get it to shut. And that requires IV meds in the hospital…shocker. All of a sudden my face has decided to start swelling up during attacks, yet again a new symptom. When a new symptom comes along I always ask the Hemiplegic community, and every time they back me up. 11 people replied to my post about facial swelling, saying the same happens to them during attacks. Wonderful. From about 6-12 hours before symptoms become recognizable, I now cannot use the restroom. TMI, I know. They say my bladder and\or right kidney are probably getting paralyzed along with the rest of my right side. Sounds logical to me. We’ve all gotten a little discouraged the past month or two, but when my mom and I went back to read through some of our original HM research findings it was just another definite confirmation that somehow Hemiplegic Migraines are the root of all of this. How? How is all of this even possible?

A few nights ago I found myself tearing up and getting that uncomfortable feeling in my stomach as two new member of our Hemiplegic support group described their attacks. It always makes me nervous for a newly diagnosed HMer, but sadly it makes me feel a tad better for the ones that have been dealing with it for so long that they have some idea how to handle it, the definite diagnosis is just what they were needing. The two stories I read Wednesday night just made me feel even more bummed out, like when is this disease going to get figured out? I’m not sure lucky is the correct word, but the two gals had been through only one episode each. Their experiences were similar, as they usually are to how we all started, each was rushed to the hospital and treated for stroke. Then the doctors shockingly ruled out stroke. That was their biggest shock, I think some of us reading and commenting were even more shocked that an ER DOCTOR realized, recognized, and diagnosed these ladies. I could hear the pain, confusion, helplessness and shock through their words. I wished I could just take on more of the disease instead of having to watch another person battle this. The most we can offer them is knowledge and virtual shoulders to cry on. Ugh. Ugh. Ugh.

I hurt. Bad. Majority of the time, again. My body  physically does not have the time to bounce back before the next attack comes on with the vengeance. It’s gotten so hard trying to determine how much medicine being pumped into me is too much, and how much is just what I need to make it. September 8th cannot get here fast enough. I see doctor Diamond, at the Diamond Headache Clinic, that day and get my third round of Botox. The third consecutive Botox treatment is when you’re supposed to start seeing results, so keep your fingers crossed people!!! I’m fully prepared for a hospital stay and kind of hoping I am there for a few days, in hopes that the Diamond crew can witness another HM attack. My attacks have progressed so much even since I was there in June. They’re more severe, more frequent, and lasting longer these days. My energy is back to being completely non-exsistent. I really just do not feel good most days.

All of that being said we have made some good strides recently! My home neurologist has finally come around to helping and wanting to be hands on. He’s already started to help taper me off of some of my current medications so that the transition won’t be so rough on me when I get to Chicago. I’m sure that hasn’t helped me feeling lousy. He actually came and saw me during an infusion last week. WOW! He scheduled some tests for the very next day, just to be sure there wasn’t something new going on that is making all of this worse. Following up on those, this week he added a CT scan. The nurse who helped put my port in came to access it and see how it was looking, she’s a pretty sweet older lady. 🙂 When they inject the CT contrast dye into your line they always warn you that it’s going to feel like you peed your pants, wellll that never fails! It’s so weird that even though you know it’s the dye, it feels SOO much like you wet your pants, you still feel like you need to check and make sure. …at least I hope I’m not the only one that happens to! The contrast dye always makes me really sick though. Immediately an even more powerful headache hit me, which was a bummer since my infusion the previous day had me feeling good. The rest of the day I could hardly stay awake. When I did wake up it was because that darn dye was making me sick. Blah. Thankfully, results only showed cysts.

I’ve also been doing some serious research on treatment ideas to present to both neurologist teams. Nerve blocks help several kinds of migraine, after asking around the HM community it seems about 50/50 on the success rate for Hemiplegic Migraines. But hey, if there is any chance I’m willing. I’ve done the most research towards the idea of Lidocaine Infusions. It’s a treatment kind of new to the migraine world, but the first site I read mentioned it helping HM specifically. There’s some potential side effects, but that comes with any treatment I’m going to try. At least it isn’t an opioid! I have a few other things on my list to throw at Dr. Diamond and Dr. K(my home neuro), one of them has to be worth a try! I’m just hoping Dr. Diamond has an open mind, at least to a conversation about my ideas, because she typically runs quite old school. Especially in her medication plans. I’ve been wishing we lived in the UK lately because they have started a experimental few trials and different, new, ways of treatment. People seem to be having some success with them because several articles have been posted about them lately.

I’ve been working more with my Chiropractor because she does help my jaw feel better. Last week, my jaw was spasming and beginning to lock when I saw her. She popped and moved everything. My favorite thing in the world is when she puts pressure around my head and neck, she always hits the EXACT spot. Best. Feeling. Ever. I have loved Dr.C since the very first day she started working with me. She just cares so much. Dr. C is also the founder of the local charity foundation, Pascales Pals. She has presented me with the opportunity to ask for something that I need or want. “Something that makes you happy,” she told me with a hug. After much research, I have decided to start the process of getting a Migraine Medical Alert Dog, with their help. I have found the company I would like to work with, and decided to send in an application to see if they would even qualify me for a dog. They got back to me in less than a week, and have given me the next application of the process… with that they can start looking for the perfect dog for me! Just a brief description of some of the things they can do include; retrieving and open medicine bottles for you, bracing you when you have a seizure or become paralyzed, and most importantly, can sense an attack 5-60 minuted before one begins. Yes, that’s a huge time window, but if I can take medications when an attack is brewing instead of waiting for when the symptoms begin, I could potentially abort several attacks. An alert dog could really give me that independence I’m craving. We’ll see!

http://www.pascalespals.org

Even though it has been a really rough summer, I still sometimes feel better between attacks than I used to. Getting infusions weekly help me, even if that means more medications in my body. Sometimes that is just necessary. Infusions have been running quite smoothly lately which just takes my stress level down. I better not have just jinxed myself… I just have to make it through the week and then I’ll be back in Chi Town. My dad is coming with this time! Praying for a smooth, uneventful, productive trip. Also begging for no more progression for awhile and some serious relief!

A perfectly descriptive image drawn by fellow HMer – Tammy Greer

Infusion Treatments😷💉💊💪🏼

According to aafp.org, of the 51% of chronic migraine sufferers that report serious disturbance in quality of life, 83% percent of those people are found to be treated best with intravenous medications. These numbers are backed up by the 62% of chronic migrainers who find substantial relief in long term infusion therapy.

My body has proven these numbers to be very true as I have always responded to IV medications, still having to be in high doses, whereas I have no reaction to oral medications. So, although the ER is full of triggers and is a temporary fix, we have found it to be the necessary step for my body. My parents and I spend our bonding time in the hospital more than anyone knows. During my Diamond hospital stays, never less than a week, I am on continuous IV therapy that my body depends on.

   Emergency Room visits and Chicago trips just aren’t a practical way to mange life. I already have to go to Chicago every 90 days. Between attacks, I’m typically extremely hypotensive but during an attack I shoot up into the hypertensive range. I am unable to maintain my own hydration, at all. Although I take the maximum dose of Magnesium daily, my levels have just continued to drop. So, in March, Dr. Diamond decided to start me on weekly infusion treatments as a preventive, meaning I would go each week even if I wasn’t feeling bad. I would be getting fluids for hydration and blood pressure maintenance, magnesium to supplement my levels, Phenergan to help my crazy nausea, a medication for my seizures, a med for pain(but no opioids for me!), and my lucky drug, Benadryl, in high doses for my migraine.

 My mom, Graham and I found ourselves in the infusion center, surrounded by sick, elderly people, ready for my first infusion treatment. I was given the choice between a recliner or bed room. I chose a bed room so I could nap. I had a quiet, private room, able to turn the lights down and shut the door. The two chairs in the room for my visitors were even kinda comfy! I started to relax as I jumped right into making myself at home, moving everything to how I like my hospital rooms. Graham is uncomfortable with how comfortable I am in the hospital setting. Poor guy.

 Lewis was my nurse that first day and he immediately made me feel better. He took the time to listen and really answer each question I had. But of course, he struggled with my crappy grandma veins. Lewis got me through my treatment keeping me as comfortable as possible, he must’ve done something right because I slept for four of the six hours! He still comes and checks on me when he sees that I’m in. Kelsey approves of him because he snuck both of us some chocolate ice cream last week, annnd tied Kelsey’s glove balloon😉

 (gotta keep her entertained somehow😉)

Although weekly hospital trips aren’t ideal or exciting, I’m thankful for the easy, smooth, helpful flow of the infusion center. But each week it was getting harder and harder to place a good IV. Multiple nurses would try, several veins were blown out, and NICU lines were making for a long(6 hour+) painful trip each week. When my veins weren’t healthy enough for a mid-line I finally went under the knife and got my portacath placed under my collar bone. This improvement cut my infusion times in half, made the reception of the drugs safest and made it basically pain free each treatment. Hallelujah!🙏🏼🙌🏼

    (NO more IVs!!!)

  (Being bionic woman is extra cool)

All the people willing to support me and go with me to keep me company during an infusion just makes me so so happy. At least it gives my parents some downtime? Ehh. Graham loves to come sit with me but is sure to watch the nurse like a hawk. He knows exactly how it should go, step by step, and is not afraid to speak up when something is skipped. That’s a lot of responsibility for a nine year old. Parker plays with every gadget in the room….twice. Including the nurses😉 My grandmas and aunts have taken their turn without complaints, too. Love them!

  (We didn’t leave until 5:30am 😳)         

Even more special, either Ashley or Kelsey is there almost every week. Ash loves to badger the nurses with questions, yet is still always mind blown by something new every time she comes. Kels and I take advantage of the perfect time for lunch dates and Pinterest pinning. Wellll, she actually just takes advantage of out of it Hadley.😂 Zach and I got stuck with a two hour extended infusion and cranky nurse. The treatment center closes at 5, I think we walked out at 7:30. Oopps. Zach may never volunteer again, I was just thankful for the good company and Mugs Up date!

        (Skype dates: the obvious Hospital must-have)

So, each week, for the last three months, I intial and sign the consent forms before the receptionist has time to explain it to me, then check in with Nurse Kayla for my room assignment. She always smiles and sends me to my “regular”, room 5, that is oddly comforting to me every time. Maybe next time I’ll share my Captain Crunch. Ha! Passing around “good mornings” with my nurses and joking about who called dibs on me this week, happily makes me feel like more than just the next patient. I think all of the infusion staff has stopped by for a high five or hug for winning the port battle😊 I’ve really gotten quite comfortable and have appreciated the honest communication and backing up the patient.

So, each week, indefinitely I will have my port sterilely accessed and get: my pushed medications quickly, my infused meds safely, and my fluids dripped over two hours. I’ll keep making the best of the trips by taking naps and enjoying the company I have for the week. The treatments are completely worth it, so I unplug(mostly) for the day and usually settle in with a good movie to watch, or I’m in a med coma state. I’ll keep walking out of the hospital feeling like a totally different person from when I walked in, and that’s the best feeling.

 (She’s actually de-porting me for the week)         

Unfortunately my Hemiplegic Migraine attacks have begun to land me in the ER more and more frequently. In fact we got home from the emergency department at 5:30 the other morning and had to be back in the hospital for my infusion at 10 AM. Don’t worry, I’m easily Boone Hospital’s # 1 patient. So, I’m very thankful that these weekly infusion treatments have made a distinct change in my chronic migraine, canceling out the ER trips for those as well. I have been pleasantly surprised with the mostly, smooth communication between my Chicago doctor and Columbia doctor. That’s way too rare. I could write a never ending book about the frustrations us frequent flyers run into within the hospital system, or I could just become president and change the medical world, right?! Yeah, noo thank you. At the end of the week, these inconvenient infusions are 100% worth it to help keep my body rollin. In fact, on an average week, a day or two before my treatment I begin to drag. Basically, I just need a swift kick in the rear once a week💁🏼 I also couldn’t be happier with my port, best decision I have pushed for. Although drugs may be hard on your body, they are sometimes necessary. If you think IV therapy could be a game changer for you too, look into it! Work with your doctor to come up with the best cocktail for your health, it’s all about trial and error. Listen to your bodies!!!

   (Standing port proud)

Ported😬

No one likes needles. And if you do, you’re crazy. At the beginning of this crazy ride needles scared me to death, I would squirm and about make myself sick, just with the anticipation. But as time went on I adjusted. I assured myself that if I took deep breaths and let the nurse do their thing, it would be over quick. I got to be a real good sport, as long as no one would talk during the IV attempt.

But no way it could be that easy. Each time a nurse would inspect my arms they’d comment on the scarce good veins I had to offer. Since I was usually going in pretty dehydrated, I knew that wasn’t helping things. At the beginning of this year I only had a few bad IV experiences to show for it. That was at the beginning. 

In October I started my 15 day hospital stay in Chicago. My first IV ended up infected and really painful. At 2am my night nurse agreed that it had to be changed. After careful inspection she couldn’t get another line started and called the pediatric nurse in to try, he got a tiny IV started, but it would have to do. Being in my hand it wasn’t very protected and by the next day I had knocked it into a nerve. Bye-bye IV #2. My nurses decided a picc line was my best bet, and I was happy to try it. A picc meant I could get all of my meds and blood drawls via that one line. Sweet.

So into the OR I go. Dr. Hickey was gorgeous, seriously. The two nurses were hilarious, but it was my first time getting a “surgical procedure” and the nurse swinging a tall needle full of lidocaine around definitely knocked up the nerve scale. Don’t worry, I made it through, no harm, no foul.

Unfortunately I ended up really sore and uncomfortable, all signs pointed to blood clot. After a quick ultrasound it was confirmed that I had, indeed, already developed a clot around my picc. It was still superficial and was taken care of with daily blood thinner shots in my tummy…ouch!

Fast forward to Decemeber. Another 9 day Chicago hospital trip resulted in a blown vein, and three more IVs. Yay.

 Later that month in the ER a nurse placed a bad IV that ended up infiltrating the medications into my surrounding tissues…not my vein. Infiltrated IVs are PAINFUL!!

Now, skip ahead to March. Yep, you guessed it, another Chicago hospital stay. This one 11 days inpatient. IV #1 was a placed really well in my right hand, but since IVs can only be left in for 4 days it had to be replaced. IV #2 was placed with some trouble in my left hand, but I still got 3 days out of it. IV #3 took 2 tries, but ended up in the bend of my left arm. Unfortunately, the vein was just too small and on day two the line had to be removed. Keep in mind that 3 of the meds I get via IV are terrible for my veins, so as time moves on my veins just kept getting worse. IV #4 was almost impossible to get placed. A last resort attempt earned the IV a spot in the bend of my right arm. The next morning my day nurse came to push my first round of Benadryl. It hurt so bad. Benadryl literally slices your veins and hurts, but usually I just wince. When the nurse reattached my fluids I was doubled over in pain. I knew something was not okay, and myself stopped the fluids from running. I called my nurse in and she checked the blood return, normal for my weak veins, she said. She started trying to flush with saline and I started crying. I had to yell at her to stop. I needed to listen to my body. I’m no IV whimp and this hurt sooo bad.

That was at 10:30 in the morning, by 1:30 that afternoon my nurse hadn’t been back in for any of her rounds or to give any of my afternoon meds I needed. I called in the charge nurse, who just happened to be one of the nurses I’ve stayed tight with. My arm was so swollen I had to cut the bracelets off, it was sore to the touch and a rash had started to follow the line of my vein. Vickki was concerned with my history of blood clot and had that IV out right away. That meant I had earned myself my 5th IV in 11 days. Boo. I left that trip with painful arms, collapsed veins and bad infiltration. No Bueno.

Back home my weekly infusions started and each week IVs were getting harder and harder to start. They were having to use tiny lines which was painful for me, and made the process take 6 hours.

Finally, one Thursday no one could get a line started. Infusion called a NICU nurse just to try. She gave it three shots and ended up blowing all three veins. There was no where left to try. My neurologist ordered another picc line. They set up ultrasound to look for the best placement option. Instead, all they found were tiny unhealthy veins that were unuseable. Ugh. Unable to get my treatment, they set up an appointment to get a tunneled picc in my chest on Tuesday.

I had done my research on all my options and had decided that instead, a portacath would be my best option. I had to fight my doctor on it, but stood strong that was what I wanted. A port is completely under your skin, so it doesn’t restrict you as much as a tunneled picc or Hickman line.  I would be getting a power port placed right under my collar bone. Finally.

So, after two attempts to draw blood and six attempts to place an IV so I could be put out the surgeon decided to place a special catheter. He tented, sanatized, and numbed the site before placing the catheter. He got it all the way in before discovering an unknown blood clot and had to remove it from my left arm. He repeated the process on a new spot in my right arm and finally got it. But it was so sensitive that a nurse had to stand and hold it in place while the meds dripped in.

The port placement takes roughly 45 minutes, mine took almost 2 hours. The first hour was spent trying to get accsses. Ouch. But now the port is in place and healing nicely. Thank goodness!!!

I’ve had it accessed three times now, and it is definitely tolerable compared to the multiple sticks previously. Yay!

    

Mom and Hadley take Chicago!

We survived getting to the big city all by ourselves! My dad sent us off with farewell grunts as he lifted our suite cases out of the car. For the record, mine weighed three pounds less than my mom’s so she carries big bags too(Casey and Sally😉)!Of course our plane was delayed an hour after we went through security and then another hour and a half once we got on the plane. Frustrating!! We were a little worried how me and flying would mix, but I only put on one small show for the crowd. Once we landed and got our luggage Mom was too scared to flag a taxi so we hopped on a shuttle. What was supposed to be a hours ride to the hotel in downtown Chicago took us two and a half hours. If you know my mom….everyone must’ve been running on her time clock that day. 😉 As we battled the front desk with messed up reservations my mom discovered she’d left the folder with all of my forms for the doctor visit on the plane. We finally got everything straightened out and headed up to our room….on the 13th floor of course. We don’t travel in any other style! 

Through the waiting in tight spaces on the plane, to standing forever and again being in tight spaces with a crying baby during our shuttle adventure, and then through the mix ups, my body gave it it’s best shot. I hung in there…at some points I don’t know how. Easily fatigued Hadley plus a day full of travel aren’t exactly meant to be. But we managed. We missed all meals during the day so decided to walk down the block for my first run in with Chicago deep dish style pizza! I gagged the first bite in and settled for garlic bread and veggies instead. We walked the blocks of downtown Chicago where I learned many things!-

1- this girl’s too anxious for big city livin 

2- don’t mark your spot with a Starbucks…there is literally one on every corner

3- the city stinks. Bad.

4- Chicago goes out of their way for the “typical white girl”….everything in Trader Joes is pumpkin spice flavored 

5- Chicago runs on Pepsi products no Dr.Pepper is not okay.

Patience is ones greatest virtue

~Had