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.

41e13b25-05e5-4afa-bcbb-4cb49823bcc3
😉

I hope this reached some level of making sense.

Advertisements
Posted in Beating Hemiplegic Migraine, Chronic Migraine, Daily Migraine, Health Blog, Hemiplegic Migraine, PICC line, port, port surgery, portacath, Seizures, Today I Win, Uncategorized

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!

    

Posted in Beating Hemiplegic Migraine, Chronic Migraine, Daily Migraine, Health Blog, Hemiplegic Migraine, Seizures, Today I Win, Uncategorized

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