Monday, August 31, 2015

September is Chiari Awareness Month and IIH Awareness Month!

Chiari Awareness Month officially starts today! I urge everyone to check out the Conquer Chiari website for more information, including FAQs, guides, and current research in the field.

And the Conquer Chiari Walk Across America takes place on September 19th! If you would like to walk, please check out the list of walking sites here
If you would like to donate, you can do so here (you even get to chose the location and person you would like to sponsor with your donation!). 

Also starting today is Intracranial Hypertension (IIH) Awareness Month! For more information on IIH (including news, events, and research) please visit the Intracranial Hypertension Research Foundation website. And if you would like to donate, you can do so here.

Tuesday, August 25, 2015

Happy Birthday!

Today is my 30th birthday!  I remember, back when I was 19 years old, freaking out because I would be 20, and no longer a teenager. And if I had known what my 20s were going to be like, I probably would have been even more freaked out. Because my 20s weren't fun. Sure, they had their fun moments, but those moments were overshadowed by brain surgery, hospitalizations, gall bladder removal, and more diagnoses than I have fingers. That's why I'm so excited about my 30s - because I want to make them everything my 20s were not. That's not to say there won't be any medical problems in my 30s. I really can't prevent that kind of thing. But I can meet my 30s with joy and excitement instead of dread. I am determined to do the things that are traditionally done in your 20s: get a job, find an apartment, maybe date and find someone to love. And if I don't accomplish these things, that's ok, because I tried. 

Even more important, I have friends and family backing me up. They're the reason I made it through my 20s with some sanity. They were the bright spots in my life when everything else seemed dull and grey. They never gave up on me, and for that, I'm eternally grateful. I don't know what I would do without them and I don't intend to find out. So if you're a friend or family member reading this, guess what?  You're stuck with me!

Monday, August 17, 2015

My Present and Future

Since I'm already writing posts about my past (the Origins series), I thought I'd write a little something about my present.

Currently, I'm on social security disability, which means I am not working. But that doesn't mean I do nothing aside from running this blog. Things I have going on this week (August 17-23) include:

Monday ( 8/17; today) - take morning medicine, balance checkbook, take afternoon medicine, get brother off the bus and set up his enteral feed, spend at least one hour writing or doing writing prep, take evening medicine
Tuesday (8/18) - take morning medicine, morning appointment for Botox, take afternoon medicine, get brother off the bus and set up his enteral feed (if feeling well enough after Botox), spend at least one hour writing or doing writing prep, take evening medicine
Wednesday (8/19) - take morning medicine, take afternoon medicine, get brother off the bus and set up his enteral feed, go out with my best friend (in the evening), spend at least one hour writing or doing writing prep, put new post on blog, take evening medicine
Thursday (8/20) - take morning medicine, go to supermarket, exercise for at least 30 min (Move! Bollywood via DailyBurn), get allergy shot, take afternoon medicine, get brother off the bus and set up his enteral feed, spend at least one hour writing or doing writing prep, take evening medicine
Friday (8/21) - take morning medicine, morning appointment with weight management doctor, exercise (Move! Club via DailyBurn), take afternoon medicine, get brother off the bus and set up his enteral feed, spend at least one hour writing or doing writing prep, take evening medicine
Saturday (8/22) - take morning medicine, exercise (Move! All Stars via DailyBurn), take afternoon medicine, spend at least one hour writing or doing writing prep, take evening medicine
Sunday (8/23) - take morning medicine, clean bedroom and bathrooms, do laundry, take afternoon medicine, put new post on blog, spend at least one hour writing or doing writing prep, arrange schedule for next week, take evening medicine

This is just a general overview of things I have scheduled to do weekly. Throughout the week I also watch tv (or Netflix or YouTube videos), read (A LOT. Like, excessive amounts of reading), spend time with my pet sun conure, hang out with my sister and brother-in-law, etc. 

To be honest, I used to be angry and bitter that my life wasn't working out the way I had envisioned. I had no job, I lived with my parents - things I saw as a sign that I was a failure. I was ashamed of myself. But someone very wise once told me I was getting something that many other people don't get: time. Time to explore my interests. Time to find out what I'm really passionate about. Time to learn about myself. Time to take care of myself. Time to learn how to be an adult slowly, rather than all at once. While I don't know what my future holds, I know I'm much more prepared for it than I would have been otherwise. And while I'll never be grateful for my medical conditions, I am grateful for the time they have granted me. 

Thursday, August 6, 2015

Methodist Days 4-8

Not much happened on day 4. I was able to sleep a little bit after taking an ambien. I also had trouble concentrating and focusing my eyes. Between the meds and the ambien, I slept more during the day, which screwed with my sense of time. At 11 pm, I called my dad because I though it was 11 am!

On day 5, I woke at 3 am. I tried going back to sleep and woke again at 7 am. The only other notes I have that day were that I hallucinated a bug on the floor and that I dropped my cell phone and it fell under the bed. The nurse had to get it for me. Oh! And I took another ambien and ended up writing the letters ALR in my notes. I have no idea what they were supposed to mean but I guess I thought they were important because I made them really dark.

My notes (with the random letters). As you can see, my handwriting became sloppier as the days went by

On day 6, it was the 4th of July. I took a lot of walks this day. At night, I walked to a large window at the end of a hallway and stayed there to see if there were any fireworks in the area. I saw a few, but I also saw a group of people wearing black robes and horror movie masks. They travelled in groups and some of them scaled the walls of nearby buildings. Obviously this was a hallucination, but at the time I thought it was real and I was very freaked out by it. 

On day 7, a steroid was added to my collection of medications. The doctor also increased one of my daily meds (mexiletine, which has an off label use for treating migraine pain).

Finally on day 8, I was released. While I was waiting for my discharge papers and for my PICC to be removed, I took some pictures of my telemetry monitor. 

This is what the cords and strap look like at first

This is what the cords and strap look like after about five minutes - hopelessly tangled!

PICC line removal is pretty easy. You turn your head to the opposite side while laying down, take a deep breath, and then while it's being pulled out, you blow your breath out. The breathing trick distracts you so you don't even feel the PICC line being removed. 

And that completes my stay at Methodist! Coming soon - continued Origins posts!

Wednesday, August 5, 2015

Methodist Story Time!

This post isn't actually about my last stay in Methodist (which was in June/July). This is about my previous stay (which was in March). 

When I was admitted in March, I was considered an emergency. I had gone in for infusion and two days later, ended up in the ER with severe pain. I saw a nurse practitioner the next week and they admitted me to Methodist on the same day. Unfortunately, they didn't have a bed available for me right away, so I spent most of the day waiting and in pain. Finally, a room was made available and I settled in. Among my belongings were two chargers - a white iPad charger and a black Samsung phone charger. 

I later found out the person who had the room before me was a man. I know this because he came back and tried to break into my room. It turns out he had left his cell phone charger behind when he left. He called the hospital and was informed that the charger had been found and was placed in a locked office. The woman the office belonged to had already left, so they told him to come back the next day and pick it up. 

However, that night, after visiting hours were over, he showed up. He arrived as a nurse was exiting my room and saw my chargers. He then began shouting in the hallway, insisting that my black cell phone charger was his. He tried multiple times to get past the nurse and into my room. I sat there in my bed terrified that he would get in and hurt me. 

The nurses were eventually able to get into the locked office and retrieve his phone charger. After he left, I told my nurse that I had been afraid and she told me she would have tackled him rather than let him in my room. I had always liked all of the nurses who work the headache unit, but she became my favorite. She later called the security desk, furious, to find out why they had let him up. I don't know what they told her, but an investigation was launched and I was questioned about what happened by security the next day. I don't know if anything ever came of the investigation because I never heard any more abut the incident after that. 

And that's the most exciting and frightening thing that ever happened to me at Methodist. I would like to reassure anyone going into Methodist that this is not a common occurrence at all. I had been in Methodist at least five times before that incident and nothing like it had ever happened to me or anyone else (that I know of) during my stays. I hope that since this occurred, security has been tightened and it will hopefully never happen again.

Coming soon - Methodist Day 4!

Tuesday, August 4, 2015

Methodist Day 3

I slept not a wink the night going into day 3, so at 4 am I gave up. I asked the nurse if I could have a shower, since I knew she'd be busy later in the day. She disconnected my meds and telemetry monitor and wrapped my PICC line in plastic (it isn't supposed to get wet). Also, you only have 15 minutes before you need to be hooked up to your meds again, so you need to shower quickly. While I was in the (tiny) shower stall, the nurse changed my bedding. After I was done, she decided to change the dressing on my PICC since it had bled some the day before. This occurs in the room, but they try to make it as sterile as possible, so you and the nurse both wear masks. There is little pain when it's changed - the only thing that hurts is when it's cleaned and that only burns a little bit.

A couple of hours later the lab technician came to draw my blood again (they do this every morning to make sure you aren't getting too much lidocaine. They were unable to get a vein so they told me to drink more water and that they would come back later. When they did come back, they were able to get the blood.

Speaking of lidocaine, I realized that I never actually said what other medications I was getting. Here's the list:

DHE (I was getting a very low dose. They tried to increase it but it made me very nauseated, so they lowered it back down again). 
Haldol (it has an off label use for migraine treatment)
Benadryl (by mouth)
Cogentin (by mouth, to counteract the side effects of Haldol)
Xanax (by mouth, as needed)
Ambien (by mouth, as needed)

Plus the meds I regularly take on a daily basis. 

I also had more classes this day. First was MAPS, which is hard to explain, but it's a good class. And afterward was Nutrition, which I only vaguely remember. My meds had been increased and I hadn't slept so I was very sleepy by that point and spent most of my time trying to stay awake.

Later in the day I requested some miralax. Just a heads up for anyone going into Methodist - you will get constipated. I highly suggest you request miralax and walk as often as you can to prevent this but only request the miralax every other day, other wise you'll get stomach pains. I speak from experience!

Coming soon - Methodist Story Time!  I explain about how during my previous stay, a man tried to break into my room!

Monday, August 3, 2015

Methodist Day 2

I woke up often the first night in Methodist because people kept coming into my room for vitals. Then around 6 am, I was woken up for a blood draw followed shortly by someone stopping by to clean the room.

My bracelets and bandage for blood draw

Breakfast was served not long afterward. The food was bland, but edible. You do get options, which often change day by day. I had a little trouble eating because my hands were slightly stiff and swollen from all the fluids I was getting through my PICC.

Breakfast - french toast, sausage, and an apple

Later on, I had to go to class. Yes, there are classes and you are highly encouraged to go unless there are some extenuating circumstances (for example, you are sick from the meds). They are held in a small conference room in the 6th floor.

Class schedule

As you can see, I had Posture Training class first. It was a good class. The instructor went over the negatives of having bad posture and the positives of having good posture. She also gave some tips and tricks to improve your posture. 

Next was Biofeedback class, which was awesome. First the instructor went over what biofeedback is, then she led us through an exercise, which was very relaxing. 

At noon, we had a break during which we returned to our rooms for lunch.  Again the food was bland, but edible.

Lunch - chicken, mashed potatoes, and carrots, with diced pears for dessert

After lunch, we all headed back to the conference room for Yoga class. Yoga was good. The instructor went over the benefits of yoga and then lead us through some simple exercises that could be done from a chair. 
WARNING - both myself and another patient had our PICC lines start bleeding during the yoga class. Her's was much worse than mine, and she had to leave class to get it fixed. Mine only bled a little and it stopped on its own, so I didn't have to have anything done.

After class I alternated sleeping and watching television. Dinner arrived and, at risk of sounding repetitive, it was bland, but edible.

Dinner - macaroni and cheese (with a random orange garnish) and orange sherbert for dessert

The only other thing that happened this day was that my IV pump kept beeping, so I had to repeatedly call the nurse to fix it.  Eventually it calmed down and I was able to (attempt) to go to sleep. I say attempt because I didn't actually sleep, but more on that in my next post. 

Coming soon - Methodist Day 3!