Friday, August 31, 2012

FAQs: Hair Care

This post is all about how I manage my hair. Now that I longer take showers, I get my hair washed in bed, as well as my baths (more on baths coming soon). Here's a short synopsis of my hair wash history since becoming injured.

When I was in the ICU after my accident I would get my hair washed maybe once a week. It was always quite the process which involved lots of wet towels/a wet bed since hospital beds really aren't equipped for shampoos, and the nursing staff really wasn't experienced with washing patients' hair while in bed. (And don't even try to sell me on those waterless shampoo caps! They were not a viable option for long hair that's really greasy from not being washed for an entire week! Those caps never did any good and actually made the hair look worse!)

When I went to the rehab hospital for people with spinal cord injuries, they introduced my mom and me to a shampoo tray; a dandy invention that makes shampooing your hair in bed much less messy. Even still, though, at that time I was still only getting my hair washed on a weekly basis since most of the nurses/techs didn't have time in their morning schedule to spend the 30 – 45 minutes it would take to set things up, wash my hair and then clean up. My mom was basically the only one who would take pity on my dirty hair and she washed it every weekend since weekends were much more relaxed than the week days.) Looking back, it's my humble opinion that the hospital employees really should've devoted a little more time in their morning schedules to wash my hair because having something as normal as a head of freshly washed hair does wonders for your spirit… especially if you're a 19-year-old girl who was accustomed to looking pretty and put together, like I

Okay, that was a little background on what my experiences with my hair were initially like after I was injured. Now that I live at home I thankfully get my hair washed three times a week (every Tuesday, Thursday and Saturday). After I get dressed for the day my mom puts the shampoo tray under my head so that my head is resting in the tray. Then water can be poured on my head and it rolls off of the side of the tray into a wastebasket that is strategically placed to catch the water. Here are a few pictures of my shampoo tray and how we position it in the bed to give you a better idea of how it works.

After my mom has finished washing my hair I get into my recliner and my younger sister Chandra takes over and styles my hair. She starts by blow drying it with a round brush and then she uses a flatiron it to make it nice and smooth. Chandra is my hair's saving grace! My mom is self-admittedly not good at doing hair and doesn't have the patience for it. What am I going to do when Chandra moves away?!! I have a feeling that a paper bag with cutouts for the eyes is looming in the not-too-distant future!

I definitely am not blessed with low-maintenance hair. Oh, what I would give to be one of those people who can let their hair air dry and have it look nice with minimal work! My hair looks awful if I just let it air dry, so I never do. My problem is that I have a lot of natural curl in my hair, so it doesn't look good if it dries naturally. Several weeks ago Chandra was in a time crunch since she had training for work early in the morning. She didn't have time to do my hair normally, so she just used some mousse and gave it a little scrunch with her hands and called it a day.

My hair has gotten quite curly as I've aged, but I never wear it that way because it's just not me. Here are two pictures that we took the morning when I wore it curly. (My hair is relatively short to begin with, and having it curly made it look even more shorter, so IF I were ever going to start wearing my hair curly, I'd want it to be a good 4 – 6 inches longer.)
Another question regarding my hair is how do I get haircuts/highlights? When I'm ready for these things to be done I call Vera, the hairdresser that I've been going to for the past 12 years. Vera is the best and comes to my house to do my hair any time I want it done (which is usually every eight weeks or so since I have short hair). Even though we're not at the salon, Vera always makes it work. She does my hair while I sit in my recliner and she's gotten really good at improvising and we now have a system down that works for us. Having my hair look nice is really important to me, so I'm grateful to have such a wonderful hairstylist that's willing to make house calls!

Monday, August 27, 2012

FAQs: How My Computer Works

How does someone who doesn't have use of their hands use a computer? It's a great question that I've been asked several times, so here's a post explaining how things work. I have a laptop computer and there are two programs I use to help me navigate around the computer by myself.

The first program is a voice activated/voice dictation program called Dragon NaturallySpeaking. You train your voice into the computer by reading a script that comes with the program. After you train your voice then the computer recognizes how you speak and say words. I wear a headset with microphone attached to it, and when I speak the program recognizes the words and commands I give it. (However, the program isn't 100% accurate and doesn't always write down everything I dictate correctly. When it makes mistakes I have to go back and correct them.) In the 7+ years that I've been using Dragon NaturallySpeaking, several new editions have come out and each one has gotten better and better at correctly recognizing what I say.

The other thing I use to help me use my computer is called a head mouse. A piece of equipment that looks very similar to a web cam attaches to the top of my laptop screen, and a special infrared sticker (about the size of a hole punch) is stuck to the microphone on the headset that I wear. When I move my head from side to side or up and down, the head mouse attached to the top of the laptop tracks the movement and that's how I move the cursor/mouse. When I have the arrow or cursor on the right spot, I give a command like "mouse click" or "mouse double-click" to make the computer do what I want. When I want to write an e-mail I just pull up DragonPad and dictate a document that I can then cut and paste onto Yahoo when I'm ready to send it.

Several people have also asked me how I use my camera. Unfortunately, there isn't any adaptive technology that I'm aware of that would enable me to take my own pictures. It would be great if I could since I've always had a fascination with cameras and photography, but since there isn't I'm at the mercy of other people to use my camera to take pictures for me. Sometimes it's frustrating to have to try to explain to other people what sort of technique to use to capture the exact sort of shot that I'm going for, but I think I fare pretty well for the most part. My mom and younger sister Chandra are the ones who usually take pictures for me and they usually oblige me anytime I say, "Get the camera!"

I get on my computer just about every day (unless I have somewhere to go) and I spend the majority of the day on my computer (usually around 10-12 hours – no exaggeration!). Lots of people ask me what I do when I'm on my computer. I can do anything that able-bodied people can, like e-mail, blog, Facebook, Pinterest, shop, work on various projects (like slideshows or my Shutterfly photo books), research things, listen to audio books, watch movies/shows, etc. I'm always busy doing something.

I'm so grateful for modern technology and for the programs that enable me to use a computer all by myself without needing the assistance of others. It's a really liberating feeling to do something so normal, especially since there are so many things I can't do (or need assistance doing).

Here are a few pictures of my laptop. I have a nice 17.5" screen (if it were smaller I wouldn't be able to see things near as well, so that's why I got the biggest laptop I could). Next is a close-up of my head mouse.
Here are two pictures of me "in action." (My hair is a mess and I don't have any makeup on, so excuse me for looking like a hot mess!) If you look closely at the picture below you can see the little infrared sticker stuck to this side of my microphone. My head mouse (pictured above) tracks the movement of my head so that when I move my head, my mouse/cursor moves on the computer screen as well.

Getting Botox

The other day when I wrote about my surgery, I forgot to mention that I got Botox! Not in my face (I'm not quite old enough/wrinkly enough for that yet) but in my bladder.

Now that I have a spinal cord injury that means that my body is compromised in lots of different ways. One of those ways is that I have what you call a neurogenic bladder, meaning that my bladder (which is a muscle) frequently spasms. These spasms make it difficult for me to stay dry if I have much urine in my bladder. If my bladder is too full when it spasms, urine will leak out which means that I'm constantly wetting my pants. (Embarrassing, right?! This shouldn't happen to an adult!)

As spinal shock wore off after my injury the muscles in my body started spasming. I started taking medications to help prevent these spasms, and they work relatively well, but if I stopped taking them my muscles would constantly be twitching/jerking (and my bladder would constantly be leaking).

Earlier this year Botox became FDA approved for use in the bladder, so my urologist, Dr. Brandes, mentioned the possibility of me getting shots of Botox in the walls of my bladder to paralyze it so that I would't have to worry about having spasms that cause my pipes to leak. I thought about it, but then opted to just stick with my medication since it controls the spasms relatively well. Plus, I didn't want to have to make a special trip to the office which would mean having to get out of my wheelchair and onto the narrow exam table. (I also didn't look forward to having to get partially undressed so that my doctor could have access to my bladder. I just said, "No thanks" and planned to stick with the medication.
Last Tuesday when Dr. Brandes talked to me in the pre-op area before my surgery he brought up the possibility of getting Botox again since it would be really easy and convenient to do since I'd already be out of my wheelchair for the surgery. I said, "Well, when you put it that way, sure… why not?!!" So I got shots of Botox in my bladder. It will take a couple of weeks to become fully effective, but I'm excited and hopefully I can even stop taking the medication for bladder spasms. I love medical advancements!

Saturday, August 25, 2012

FAQs: #1 Most Frequently Asked Q

Today I'm making another post about another FAQ. In fact, this is the question that I've been asked more often than any other question in my nine years of paralysis (and always by females). The question is do I still have menstrual periods, and the answer is yes.

I actually didn't have a period for a few months after my accident (probably because of the shock/trauma that my body was experiencing) and I myself wondered if I would still have periods. About two months after my accident while in the rehab hospital I got a period which was a rather humiliating experience, as you can imagine. Especially when Vershawn, the tech doing my morning bath acted rather disgusted and put out. "Did you know that you were expecting your period?!" she questioned me. Her statement was so abrupt, like I was really putting a damper in her morning schedule. My mom still hadn't made it to the hospital that morning so I was all alone. In my quiet whisper of a voice (remember, I could barely speak above a whisper at this time) I tried to explain that no, I didn't know that I was expecting my period. After all, I hadn't had a period since my accident and I didn't even know if  I would still have periods.

The way periods were handled at the rehab hospital really left something to be desired in a major way, and I seriously hope they've improved their methods since I was a patient there. They basically made a makeshift pad with a pillowcase and a chuck (I don't know if chuck is the actual brand name of the pad or the technical term or what, but a chuck is one of the super thin waterproof pads (about 18" x 24") that are used in hospitals to protect regular sheets from bodily fluids and are used a lot in the labor and delivery department, or for bowel programs, etc.). They'd fold the chuck into a long, narrow strip and wrap a pillowcase around it so that it would be softer on the skin. And then they would leave you with that as your protection the entire time you were up in your wheelchair for the day. Needless to say, my first period was an awful experience!

After I came home from rehab I decided to try something different for dealing with periods. I'd used tampons for years as a teenager and knew that they were so much easier/less stressful than having to rely on maxi pads. I wasn't quite sure how tampons would work in my "new situation" now that I was a quadriplegic, but I decided to give them ago. Easy peasy! Having periods is inconvenient for anyone, much less a quadriplegic, but tampons make handling periods so much easier! (To the inventor of tampons I say, "thank you, thank you, thank you!")

Here's a funny story from my past about starting my period. In fifth grade the boys and girls were separated into two groups and we had "the talk" about the birds and the bees. I found puberty very interesting and looked forward to the day when I would "become a woman." I waited and waited and waited all the way through junior high school. Just about every other girl I knew had started their period somewhere along the way while in 6th/7th/8th grade and I was sure that I was the only one that hadn't!

By the time I started high school and still hadn't started my period I was absolutely positive that there was something seriously wrong with me/my reproductive system. I was so nervous about the situation and was absolutely sure that I'd never be able to have children. In hindsight I realize how silly I was, but at the time it was quite traumatic and filled me with a lot of anxiety/dread. Long story short, I started my period during my freshman year of high school. Imagine the relief that washed to realize that I was "normal!"

Friday, August 24, 2012

How It Went…

I'm glad to be home from the hospital. I've said it before and I'll say it again… there's no place like home! I definitely can't complain about anything since I got excellent care while in the hospital, but at the same time, there's nothing like sleeping in your own bed, being in your own environment and doing things according to the routine that you're used to.

My mom and I left for the hospital on Tuesday morning about 8:30 AM since we needed to be there at 9:30. After we checked in we waited in the waiting room for about an hour before being taken upstairs to the pre-op area around 10:30. I was transferred out of my wheelchair to a gurney, I got undressed and a nurse came over to start asking my mom and me the long list of routine pre-surgery

After we answered all of the questions the nurse tried to start an IV. I always dread this part of being in the hospital since I'm an extremely hard stick since I have the TINIEST veins and I always fear that they won't be successful. The nurse didn't have any luck, so an anesthesiologist came over to take a peek at my arms. After looking for a while he found a tiny vein told me not to move a muscle while he stuck me. I told him I'd my best not to move! He gave it a shot and was successful. Whew!

My urologist, Dr. Brandes, came over to talk with my mom and me. He ordered some IV antibiotics as a precaution to guard against any bacteria that might stirred up in the operation. I have to say that I love my doctor so much! I've been going to him since I came home from rehab in the beginning of 2004. I actually wasn't that crazy about him at first because he doesn't have the best bedside manner. He's very quick, get to the point and not exactly warm and fuzzy. But we've been through a lot together over the years, and now I just love him!

I had a huge kidney stone that he removed in 2008. The surgery turned out to be much more difficult than anyone was expecting and I almost died. As Dr. Brandes put it, I was "teetering" on the edge between life and death and he said it could've gone either way. I think he's learned a lot from me over the years, and now any time I have any sort of problem or procedure he's always extremely cautious with me. Better to be safe than sorry, right?! Dr. Brandes has actually become much more personable over the years and even jokes with me now. When he came over to see me in the pre-op area on Tuesday he told his resident he was "going to see his girlfriend Heather" and that he and I have grown up together over the years. I laughed when he said something about unsuccessfully trying to kill me a few years ago (in 2008).

Dr. Brandes told us that the plan was to remove the kidney stone in my left ureter and then go after the 1 cm stone in my left kidney. He was going to use a laser to break the 1 cm kidney stone into smaller pieces, and then remove the pieces with an instrument with a little basket on the end of it. It sounded like a plan and I hoped that it would all go according to plan.

My mom and I waited in the pre-op area for hours because the case before mine took an extra long time, so we had to wait our turn for the OR. I was glad that my mom and I had taken a book with us to read to help pass the time. I had no idea we'd be waiting so long, but that's the way it goes in hospitals. I was finally taken to surgery about 2:45 PM. My mom went to the waiting room and she got a call about 3:40 PM that the surgery had begun and was going well.

Dr. Brandes called my mom just before 6 PM to tell her that the surgery was over. He explained that things didn't go exactly as planned. He successfully removed the kidney stone from my left ureter and then went to go tackle the 1 cm stone in my kidney. When he got into my kidney he found out that it wasn't a 1 cm stone after all like he was expecting from what he saw on my x-rays, but instead it was a cluster of hundreds of  tiny kidney stones (measuring 1 mm to 3 mm). He cleaned out the stones from the upper pole of my kidney (whatever that is), but said that he couldn't get all of the stones out of the middle and lower poles. He said trying to gather all of the tiny stones in the basket instrument thing was like putting sand in a colander (since they were so small and just kept slipping through the holes in the basket). By the time I'd been in surgery for more than two hours Dr. Brandes decided to call it a day.

So the surgery was semi successful. There are still lots of kidney stones in my kidney and Dr. Brandes said that he wants to think about the best way to remove them without stirring up a lot of bacteria that will get into my bloodstream (that's a sure fire way to get me septic). After the surgery was over I went to the recovery room. I usually wake up from anesthesia with no problems, but I had a much more difficult time of it on Tuesday. For some unexplained reason I had tachycardia (rapid heartbeat) as my heartbeat was in the 140s which is much higher than my usual heartbeat of somewhere between 60 – 80bpm. Blood labs were taken and an EKG was done to see if either of those things would explain my rapid heartbeat. We never got a definitive answer, but my heart rate stabilized after a few hours.

After surgery I was quite agitated and tired and I don't remember a lot of what transpired in the recovery room (which is unusual for me since I usually perk up right away). I was pretty out of it, but not so completely out of it to not recognize Dora Lee, a nurse who had taken care of me when I was in the hospital four years ago. I guess that's just my steel trap memory for you! I was also pleased that I didn't wake up to burning eyes (for some reason I have an awful reaction to the adhesive that they use to tape your eyes shut during surgery). I told the anesthesiologist about the awful burning reaction I usually have, so he said he would put some saline soaked gauze on my eyes and then put the goggles on top of that and adhere them  to my face with Steri-Strips instead of the adhesive on the goggles. It did the trick of protecting my eyes without burning the heck out of my skin. (Thank goodness!)

After more than four hours in recovery I was finally stable enough to be taken up to my room (it was around 10:30 PM). I was pleased to see that the nurse that would be caring for me that night was Erin, one of the nurses that cared for me when I was in the hospital two weeks ago. She was so good to my mom and me, so I was very grateful to have her back. I got a horrible night's sleep that night because I couldn't get comfortable. First off, I was freezing! I woke my mom up and asked her to put another blanket on me and to adjust the temperature in the room since it was quite chilly, but then a few hours later I woke up and was incredibly hot. I was so uncomfortable that it was difficult to sleep, not to mention that my muscles wouldn't quit spasming. I hadn't been allowed to eat or drink anything on Tuesday since I was having surgery, so that meant that I'd missed all of my medications for 24 hours (including baclofen, the medication I take to control my muscle spasms). My body just twitched and jerked all night long and well into the next day until I'd had several doses of my medication.

The plan was for me to go home on Wednesday, although it depended on how I was doing. My white blood cell count was slightly elevated on Wednesday (which can be indicative of infection) so Dr. Brandes conferred with his residents and they all decided it would be best to keep me for an extra day just to be safe. I wasn't thrilled at having to stay, but I wasn't surprised, either. I just tried to make the best of it on Wednesday. I was extremely tired, but any time I tried to sleep I couldn't fall asleep, so I basically rested all day. My mom and I read some more in our book and watched TV together. Thank goodness the hospital lets my mom stay with me! It's really only in their best interest, though, if I have someone stay with me that knows me/my care (like my mom or younger sister Chandra). That way they can help assist me when I need something which in turn helps the nurses. I would hate having to stay at the hospital all by myself. It's not like I can push a call light to summon the nurse if I need help, and even if I could, I know explaining exactly what I'd want/need would be frustrating.

As Wednesday went on I felt better and better. That evening I asked for a sleeping pill since I'd slept so poorly the previous night and it did the trick. I slept wonderfully! By the time Thursday rolled around I was ready to bust out of the hospital. When the doctors rounded early that morning I told them I was more than ready to go. They said that my numbers looked a lot better and that I was free to go as soon as me nurse drew up the discharge papers. Chandra came to the hospital a little bit later that morning to help Mom get me dressed and we made it home about 1 PM.

Thankfully I fared well through the surgery and my time in the hospital. I'll have to have another surgery in a month or so after my doctor decides how he wants to treat these small stones. I look forward to getting that done so that I can put all of this kidney stone/hospital business behind me for a little while.

My friend Kellie made me some "nurse bait" for me when she found out I was going to the hospital. It was so cute and very thoughtful of her!

Tuesday, August 21, 2012

FAQs: Bathroom Business

I don't know about you, but I'm the kind of person that's curious about everything and my mind is constantly riddled with questions about one thing or another. If I weren't paralyzed, but I knew someone who was, I know I would have lots of questions about how they do this or that. SO, I've been thinking lately about some different topics that would make for interesting blog posts to answer some FAQs for people who might be curious about things, but wouldn't feel comfortable asking.

I'm going to be bold and make today's post all about going to the bathroom. It's sort of embarrassing, but I really don't have anything to be ashamed of, since it's a natural part of life that everyone has to deal witheven paralyzed people. So how does someone who can't move and use their muscles take care of their "business"? There are actually several different options that people with disabilities have to take care of their bladder and bowel needs, depending on their injury/limitations, and also depending on their personal preferences. I can't speak for everyone, so I'll just tell you what works for me and my situation.

I'll first start by explaining that when I broke my neck I immediately lost all function below my level of injury (including movement, *sensation, bodily functions, etc.). *I initially lost much of the sensation from my neck down, or it felt really abnormal/different (like pins and needles), but in the weeks and months after my accident I regained much of the sensation I'd lost as "spinal shock" wore off. (FYI, I think it's unusual for someone who's sustained an injury as high on the spinal cord as I did to have so much sensation.) Back to how I manage my bladder/bowel functions…

"Number One"

After my accident I was catheterized (a catheter was inserted into my bladder via my urethra) since I could no longer control my bladder (which is a muscle). This is how it remained for the next few months (the seven weeks that I was in the ICU, and then the first month or so that I was in the rehab hospital). However, since an indwelling catheter via your urethra isn't a long-term option, something permanent needed to be done. As I said, I have absolutely no control over my bladder muscle, so the only option for me in my situation was to get a supra-pubic catheter. I had surgery and a hole was drilled straight into my bladder (about an inch above the pubic bone). A catheter was then inserted into the hole (which my mom changes on a monthly basis). This is how the urine drains from my bladder.

"Number Two"
Just like with my bladder, I lost all control of my bowel function after my accident. In the time that I was in the ICU after my accident, I had maybe a few small bowel movements, but they were definitely not substantial enough to keep my excretory system functioning properly, and by the time I got to the rehab hospital seven weeks later, my bowels were severely impacted. (An x-ray of my abdomen was taken when I first got to the rehab hospital, and the x-ray showed that my small intestine was full of stool (since I basically hadn't had any substantial bowel movements since my accident happened, seven weeks previously).

My intestines needed to be cleaned out, so a 16 oz. bottle of magnesium citrate was called into service. I've heard that that stuff tastes awful, so I was very grateful that I still had a feeding tube at that time so that I didn't have to drink it! Long story short, it did the trick and cleaned out my intestines.

One of the things that my mom and I learned about in rehab early on was about bowel programs (something that we started doing immediately). I knew that I definitely didn't want a colostomy (I felt way too young to have such a vile thing for the rest of my life!), so I was glad to learn that there was another option to take care of my bowel needs. This is basically how a bowel program works: you turn on your side in bed (or you could sit on a toilet or bedside commode) and a suppository is inserted into your rectum. After a while (the amount of time is different for different people) the medicine in the suppository causes you to have a bowel movement. Sounds pleasant, right?! I definitely didn't look forward to this nightly ritual at firstwho wouldbut I got used to it. (This was yet another thing I had to resign myself  to after my accident.)

At first I dreaded the daily BP, but there was really no other alternative since you still have to eliminate your waste. The BPs eventually became easier, especially as my nutrition improved. In the first year or so after my accident I didn't drink enough water or get enough fiber, but once I started drinking copious amounts of liquid (8 to 10 cups/day) and getting lots of fiber, it made a world of difference. (I'm on a lot of prescription medications and one of the side effects of many of them is constipation…lucky me). I also started doing my BP every other day instead of daily, which was nice so that I didn't have to do it every day. It's nice to have "trained" bowels so that I don't have to worry about having involuntary bowel accidents like many people in my situation do.

So there you have it. I hope you found this post factual/fascinating, and that it wasn't "TMI." I use Magic Bullet suppositories. They are water-based suppositories (as opposed to oil-based), which means that they work in about half the time.

Friday, August 17, 2012

Citizen Kane vs. Vertigo

One of the things that my mom and I enjoy doing together is watching movies while we eat dinner. When we started doing this a few months ago we were on a British kick, but we've since moved on to classic movies. A few weeks ago we watched the 1941 movie Citizen Kane; a movie that I've definitely heard of, but knew nothing about. Citizen Kane has been the #1/most influential movie of all time for the past 40 years so I figured it was time to give it a go to see what it's all about.

The movie was strange, to say the least, but I'm so glad I watched it so that I can at least claim to know a little bit about it. I actually learned a lot. I had no idea that Citizen Kane was based on the life of William Randolph Hearst (newspaper tycoon of the late 1800s and early 1900s). I also watched a documentary that was included in the special features called The Battle Over Citizen Kane that was really fascinating and shed more light on the background of the movie.

First of all, I had no idea that Orson Wells not only starred in the movie, but also wrote, produced and directed it all at the young age of 24. I also wasn't aware of the real-life feud between Orson Wells and William Randolph Hearst. When Hearst got wind that the movie was about him he did everything in his power to make sure that the movie didn't see the light of day. Obviously, he wasn't successful. I never really grasped why Orson Wells had such an ax to grind against Hearst, but he definitely had a major vendetta against him.

Surprisingly, I really liked Citizen Kane. I didn't think that I would, because it's definitely not your average feel-good type of movie. But I wanted to watch it just once since I like being semi well-versed when it comes to books and movies. I'm glad that I now have a basic knowledge and understanding of what Citizen Kane is all about.
Another movie that my mom and I recently watched is Alfred Hitchcock's 1958 movie, Vertigo. Unbeknownst to me, the list of most influential movies was revamped just a few weeks ago and Vertigo replaced Citizen Kane as the most influential movie of all time. (I thought it was ironic that the #1 and #2 movies just so happened to be the two movies that I chose to watch back-to-back.) I liked Vertigo, but if I were choosing between the two for the  title of most influential movie, I would have to go with Citizen Kane.

Some of the other classic movies we've watched in the past few weeks are: An Affair to Remember, The Great Gatsby, Casablanca, Fiddler on the Roof, Dial M for Murder, Lawrence of Arabia and The King and I. I've liked all of them except Lawrence of Arabia which was a little too boring for me. I've made a whole list of classic movies that I want to watch, so it will be fun to expand my classic movie knowledge a bit.

Thursday, August 16, 2012

A Few More Thoughts

– On Monday morning my mom called Alice, my urologist's secretary, to see what the next step in my recent bout with kidney stones would be. Alice said that Dr. Brandes already had my file out and was "thinking" about what to do. After consulting with two kidney stone specialists he decided that the best thing to do would be to remove the stones in my left kidney sooner than later, so as to prevent other "surprise." So I'm having surgery to remove them this coming Tuesday. I'm not looking forward to it, but that's better than the alternative of getting really sick. I figure it's better to get it done sooner than later since it's something that has to be done.

– When I had the procedure to put the stent in my kidney last Saturday, I begged the doctors to NOT tape my eyes shut! (For those of you who don't know this, they always tape your eyes shut during surgery to make sure that nothing spills into them.) The skin around my eyes is so sensitive, and the past few times I've had surgery I've woken up in incredible pain. Not because of the surgery, but because the skin around my eyes feels like it's on fire. The first thing my mom has said to me after seeing me for the first time after surgery is, "You poor thing," since the skin around my eyes is bright red and looks like it's been burnt. The redness lasts for several days and then the skin peels away in thick sheets.

– Last Saturday the doctors and I compromised on paper tape, which isn't quite as bad as some of the other tapes they've used in the past. However, I still woke up from surgery with a burning sensation on the skin around my eyes where the tape had been adhered to the skin, and I had bright red circles under my eyes. The skin has all peeled off my skin and looks back to normal; just in time to have my eyes taped shut again next Tuesday!

– I love that my hospital (Barnes Jewish Hospital) is affiliated with Washington University in St. Louis and that it's a teaching hospital. I definitely don't mind having medical residents be in on my care one bit, and maybe they just might even learn something from my case. Here's a funny story: one of the urological residents that saw me on Friday evening after I was admitted to the hospital looked so familiar. I said, "I think I've seen you before," and he did in fact remember me from four years ago when he was a first-year resident. Now four years later he's a fifth year and is the chief resident. I told him that I remembered him being the one to take the central line out of my chest. He asked, "How'd I do?" and I said, "Well, I'm still here, aren't I?!"

– One of the antibiotics I was given through my IV was vancomycin, which is a great antibiotic for curing infections, but when it is infused into the body too quickly you can have an adverse reaction called Red Man Syndrome. I've experienced this reaction before and the way to prevent it from happening is to let the antibiotic infuse into your vein slowly (like over a three hour period, instead of the usual one hour period.) Anyway, the symptoms of Red Man Syndrome are a flushed, itchy face. It actually feels like a prickly sort of itching, but the weirdest thing was that the inside of my mouth itched. I was glad when the RMS symptoms wore off!

– Being in the hospital isn't ideal since it means that I'm having some sort of health issue, but it's not all bad. I have a love for hospitals and various medical things and I always learn so much. After all, I was in nursing school before my accident, so I eat up the whole experience and ask tons of questions. It always makes me wonder what sort of nurse I would've been.

Making the Best of It

When the doctors made their rounds early Sunday morning I asked them when I could leave because I was chomping at the bit to go home. They told me I'd have to sit tight a little longer to be discharged. My mom and I ate breakfast while we waited. My mom was hoping that I'd get scrambled eggs on my breakfast tray since she'd been craving them, and sure enough, I did! (I always share the food that I get because it's always way more food than I need, plus it's a shame to waste perfectly good food.) I hadn't eaten much for several days since I hadn't had much of an appetite, but on Sunday morning I was so hungry! There was a biscuit on my tray which delighted me since biscuits are one of my most favorite foods. I also ate two strips of bacon and drank some orange juice. I rarely eat breakfasts that are so high fat/high calorie, but since I was so hungry I gladly partook!

As Mom and I waited to get discharged we used the time to finish the book we were reading together; Surprise Party by William Katz. This book has been a favorite in the Johnson family for years and years, as just about everyone in my immediate family has read it at least one. (You should see our copy of the book; it's tattered and falling apart!) This book's a suspenseful mystery type that's really exciting. Newlywed Samantha is planning a 40th birthday party for her husband, Marty. She wants to make the party really special so she delves into his past to find his family members, friends and acquaintances to help with the party. However, as she searches she realizes that her husband has no past. You don't know what happens until the last sentence of the book. Anyway, it was fun to read the book again since I was in eighth grade the first and only time I read it.

My sweet nurse Lisa took great care of me and got me all ready to be discharged. I had the same two nurses both nights and days that I was in the hospital. Continuity of care is really important so you'll often have the same nurses care for you while in the hospital. I lucked out with two great nurses, Erin and Lisa, so I was really grateful for that.

I'd never choose to be in the hospital, but I always try to make the best of it. I'm always pleasant and cheerful to anyone I come into contact with, and I'm always appreciative of the people that serve me. Everyone from the doctors and nurses to the techs and housekeeping staff were so kind. One of the very best things about being in the hospital is getting to meet  and talk with new people. Characters, I tell you… you definitely meet some interesting characters while in the hospital! I also especially love how humble most of the people are. Many of them that work in the lower paying positions, like techs, housekeepers or food service workers  are so incredibly humble and they attribute the good things in life to God. It's always refreshing to hear people give God the credit He deserves.

Chandra came up to the hospital early afternoon after church and helped my mom get me dressed. We were ready to roll about two in the afternoon and I couldn't wait to get home. I fared pretty well this hospital visit since it was short and there weren't any complications, but as Dorothy says, "There's no place like home."

I could really see the hand of the Lord in the way everything worked out so precisely and conveniently. I was very thankful that this happened when it did and not the previous Wednesday when I went to the Lincoln Museum with my friends, or this past Monday when my friend Kate came over to visit. We only get to visit with each other a few times a year, so I was very glad that neither of these plans were interrupted because I would've been  mighty disappointed. God IS good!

Tuesday, August 14, 2012

Slumber Party

After I was admitted to the hospital on Friday evening I was taken to the urological floor all the way up on the 17th floor. I was shown to my room which was fortunately a private one instead of a semi private one (with two patients in one room) which was nice since my mom was spending the night with me. (She even got her own hospital bed to sleep in, too, which was nice for her so that she didn't have to spend the night in one of the hospital's uncomfortable plastic recliners.) I was transferred out of my wheelchair and into a bed. (Which, I might add, was quite hard, especially compared to the airbed that I'm used to sleeping on at home.) My nurse Erin was very sweet and it was fun telling her about myself as she went through the long list of questions that you ask patients upon hospital admittance. As we talked, I found out that we went to the same nursing school (I'd just been there a few years before she had… small world, right?!)

A little while later another nurse named Thiky (I asked her how she pronounced her name and she said like Vicki, but with a 'th') came in to start an IV. I told her that I was an extremely hard stick (I have the tiniest veins) and wished her luck. She grabbed a chair, sat down and started perusing my arms for a viable vein. A student nurse named Claire came along to observe and she was such a delight! She was so cute and had the most gorgeous blue eyes! She asked what advice I had for a brand new nurse, so we spent some time talking about things that I as a seasoned veteran patient think healthcare workers need to know.

As we talked, Thiky patiently scouted my arms and hands looking for a vein and after about 30 or 40 minutes of feeling around she was fairly confident that she'd finally found a promising vein in my hand. We all held our breath, crossed our fingers and said a little prayer that her attempt would be successful. It was. Whew! By the time all of the necessary admitting business had been taken care of it was close to 12:30 AM and I was pretty tired. I slept pretty well Friday night, considering the fact that I was out of my usual environment. One thing I don't like about being in the hospital is how so many people come in and out of the room all night long. It's hard to get uninterrupted sleep.

I was on the OR schedule to get the stent put in my kidney sometime on Saturday morning/afternoon depending on how long it took for a room to open up in the OR. I waited all morning and was finally taken down to the OR a little before 2 PM. I'm an old pro at things like this, so I definitely wasn't nervous – I just wanted to get it done! The procedure was quick and painless. I was back in my room by 4 PM and was feeling good.

Mom had been at the hospital with me the entire time, but Chandra hadn't since she'd worked on Friday and hadn't gotten home until the early, early hours of Saturday morning. By the time I got back to my room after the procedure Chandra had arrived to hang out with Mom and me. I definitely would've rather been at home than in the hospital, but since I didn't have a choice in the matter it was great to have Mom and Chandra spend the evening with me. USA network was running a marathon of one of our favorite shows to watch together, Law and Order: Special Victims Unit, so the three of us watched a few episodes. The marathon got over at 10 and Chandra had planned on leaving since she needed to get up early the next morning for church. She flipped through the channels to find something for me to watch on TV before leaving and the movie The Count of Monte Cristo was just starting. That's been one of our favorite movies for a long time, so she decided to stay and watch it with me. (What a good sis!)

The movie ended at 1 AM and I told Chan that she better get on her way so that she didn't fall asleep in church the next morning since my mom and I wouldn't be there to nudge her! ;) After that I settled in to bed and I thankfully slept fairly well. The hard, uncomfortable bed made my neck and the tops of my shoulders pretty stiff, so I was glad that I would be going home the next day.

I don't like to let my posts get too long because I don't want people to lose interest. (I know I often lose interest when I'm reading other people's blogs if their posts are super long, unless they're especially captivating.) So that's why I'm opting to make this hospital experience into three shorter posts instead of one super long post.

Monday, August 13, 2012

Rolling Stones, pt 2

Last Thursday I wrote about waking up on Wednesday with pain in my left flank. I was certain that this pain was the result of a kidney stone, and after having a CT scan my doctor confirmed my suspicions. I got the all clear to come home after my doctor's appointment that afternoon, but my doctor said that if I experienced fever, chills, vomiting, etc. that I would need to be admitted to the hospital. I went home and by Wednesday evening the pain I'd experienced all day had all but gone away, so I thought maybe I'd dodged a bullet.

I didn't sleep very well Wednesday night. I couldn't get comfortable and kept waking up. I had chills and slept covered with a blanket and had my mom turn my fan off. Even still, I felt cold, even though I knew that I was quite warm; a sensation that I think most people have experienced at one time or another. To make a long story short, I wasn't quite my normal self the next two days. I actually didn't feel too badly, but I had a fever that would come and go and I was definitely more tired than usual. (To give you an idea of how sleepy I was, on Thursday evening I was so tired that I kept falling asleep mid-sentence, or while my sister was brushing my teeth.)

My mom was on high alert since she knows how quickly I become septic and she kept asking me if I was "going down." (That's the term we use to refer to what happens to me when I start becoming septic. I get extremely tired and lethargic, I repeat myself and have a change in mental status.) Fortunately, I didn't get septic this time, but I have several times in the past so my mom and I are very familiar with the signs/symptoms of sepsis.

When my mom got me back to bed on Friday she said I felt very warm and was flushed, so she took my temperature and sure enough it was 101°. I actually felt just fine, but after discussing things, my mom and I decided that it would be best to call my urologist's secretary since it was 4:30 PM on Friday and we wanted to catch my doctor before he left for the day to see what he wanted us to do. My mom told my doctor that I was feeling just fine, but that I had an on and off fever (something that is abnormal  for me). My doctor decided that it would be better to err on the side of caution and have me come to the hospital. That way I could get started on IV antibiotics to kill any infection that might be brewing in my body, and the next day he wanted to put a stent put in my left kidney.

[I'll tell you what a stent is, because unless you or someone you know has had one, or you are in the medical profession, you probably don't know what one is. A stent is a thin, flexible  tube that runs from your kidney through your ureter to your bladder, ensuring that your kidneys will drain. This way I don't have to worry about my kidney becoming blocked which would result in urinary sepsis (a serious condition that's life-threatening if it isn't treated with the proper antibiotics quickly enough).]

Heading to the hospital was not on my weekend agenda, but I mentally shrugged my shoulders in a "what can you do?" gesture. I don't look forward to having my life disrupted with something like a hospital stay, but I just choose to have a positive, cheerful attitude and make the best of it.

By the time my mom had gotten both of us ready and we had made the 45 minute drive to the hospital it was past 8:30 PM. I'll close this post now so it doesn't get any longer and will continue this saga very soon!

Thursday, August 9, 2012

Rolling Stones

Yesterday morning I woke up with a sharp pain in my lower left side of my back. I've been through this sort of thing a time or two before in my almost 9 years of paralysis, so I was pretty sure that it had something to do with my kidneys (most likely a kidney stone). I groaned because I definitely don't look forward to the prospect of being hospitalized, and I didn't want to ruin my 2½ year streak being hospital free), however I know it's important to get things like this checked out since kidney stones left unchecked usually result in me becoming septic; something that can be life-threatening. 

My mom called my urologist's office and after they consulted my doctor they said that I needed to come to the hospital to get a CT scan. This definitely wasn't how I was looking forward to spending my day, but you've gotta do what you've gotta do, especially in my case since my health is rather tenuous. My mom and I headed to the hospital around 10:30 this morning. Once we got to the hospital we started making the rounds (we had to make several stops in different places, and we seemed to have to wait an awfully long time at each stop. Fortunately my mom and I brought a book, so we weren't as bored as we could've been. After I got my CT scan my doctor said he wanted to see me, so I was fairly certain that that wasn't a good sign.

So we headed up to the floor where my urologist's office is. He told me that I have a 3mm kidney stone in my left ureter. (No surprise considering the way I was feeling and my past experiences with kidney stones.) Fortunately the kidney stone is in my ureter and not blocking and my kidney preventing it from empting. That's happened to me before and results in making me septic (that's when you get extremely sick).

My doctor said that there's a 70% chance that I'll be able to pass this stone within two weeks without medical intervention. I sincerely hope it doesn't take near that long because I'm in pain! They always ask what your pain level is on a scale from 1 to 10, and my pain was a solid 5. I'm a tough cookie, and although the pain wasn't excruciating and could've been much worse, it still was constant and uncomfortable.

I also have a few other stones in my left kidney. They've been there for a while and haven't caused any problems, but the doctor could tell from the CT scan that they'd gotten a little bigger in the past few months, so he said it would be best to have surgery to remove them. I definitely don't look forward to this, but it doesn't sound like it should be anything major, so I'm crossing my fingers that the surgery will go well.

Tuesday, August 7, 2012

D'Arcy's Famous Horseshoes

A few days ago I wrote about taking a trip to the Lincoln Museum in Springfield, Illinois. After touring the museum for several hours we were all hungry, so we wanted to eat a late lunch/early dinner before our drive back to St. Louis. Springfield is such a quaint little town, but the restaurants in the town all close SO EARLY! I'm not sure why, but many of them close at two or three in afternoon.

When we were ready to leave the museum my mom and friends stopped one of the museum tour guides to ask her if she had any suggestions about a good place to eat. She recommended D'Arcy's Pint, an Irish pub-style restaurant that's been featured on the Travel Channel's Man vs. Food. The tour guide told us about the restaurant's famous "horseshoe" which is a piece of Texas toast topped with your choice of meat, piled high with french fries and then topped with the restaurant's specialty cheese sauce. D'Arcy's Pint sounded like it would make for an interesting experience, so we decided to go.
My mom and I decided to share a horseshoe, and it was definitely more than enough food for the both of us. We got the grilled chicken for our meat and it had a great flavor. D'Arcy's was lots of fun and a memorable experience.

Saturday, August 4, 2012

Christmas Tree Skirt

When I was a little girl we always had a real Christmas tree. We would always go out to a tree farm the morning after Thanksgiving, pick out a tree, cut it down, bring it home, set it up and decorate it. My dad was always the one who took charge and even though it was a family affair, Dad definitely had a lot to do with making it happen. After he died we continued to go out and get a real tree for the first few years, but without Dad (or another man to help with the heavy lifting) we stopped putting up a real tree. Plus, by that time all of my older sisters had moved out and it was just my two little sisters and me living at home with Mom. We started putting up a small artificial tree that my grandparent's had gotten rid of when they moved out of their home, but it was pretty hammered and eventually got thrown away.

(I promise, there's a reason I'm giving you all of this background info on our Christmas tree habits, so bear with me!) For the past many years my mom has just opted for a small, 4-foot fiber-optic tree since it's small and relatively easy. Last year I decided I was sick of not having a nice Christmas tree in our home (especially now that we often have company for Christmas and I want there to be a nice tree for my nieces and nephews), so I talked to Mom and told her I wanted to buy a nice, pre-lit artificial tree. She wasn't too keen on the idea at first fearing that she would be left doing all the work of putting the tree up and taking it down, but I assured her that we will find someone to assist us. So I went ahead and bought a tree at Target the week before Christmas and I got a great deal since it was so close to Christmas.

I asked my sister Kristin to make a skirt for my tree because several years ago she made a really cute one for herself and I promised myself that if I ever had a tree of my own, I'd ask her to make one for me. Well, I asked Kristin about it about six weeks ago. She obliged me and said she'd do it. She gave me a list of materials and supplies and I ordered everything online from JoAnn's. Kristin sure makes quick work of things; it only took her a few days to whip it out.

She boxed it up and mailed it to me and I got it last week. I absolutely love the way it turned out and it makes me even more excited for Christmas than I already was! I love my tree skirt so much, so I have to show it off to all of you. Isn't it cute?! It's really big (more than 5 feet in diameter) so here's a picture of the whole thing laid out on the floor, and then another picture of it folded in half:
Then here are some close-ups of the different pieces on the skirt. It's very intricate and detailed with things like buttons, patches, bows and hand stitching:

Blog Turns 3!

Yesterday was my blog's third birthday. I can't believe it's been three years since I started this blog, but I guess that's why they say, "time flies when you're having fun" because that's what this blog is… fun!

The thing I love about my blog is that it's a way for me to be a part of the world in a much bigger way than I'd be able to be without it. I love it when old friends find my blog and reconnect with me, and I'm always amazed when perfect strangers from different places in the United States and even all over the world contact me. It's very surreal that people who don't know me would be interested in my life and keep coming back to read my posts, but I guess I know what that's like because I always look forward to reading new posts on my favorite blogs.

I always get a thrill when people take time out of their busy lives to contact me. You have no idea how much this means to me and I always save these messages in a folder that I've jokingly named "fan mail." Please continue to e-mail me ( and leave comments because they make my day! ;)

Friday, August 3, 2012

Trip to the Lincoln Museum

Earlier this year I read Bill O'Reilly's book Killing Lincoln which is a nonfiction book about the last two weeks of Lincoln's life. I definitely don't know as much about history as I should, so I really enjoyed learning more about the assassination plot and how everything transpired. Ever since then I've really wanted to visit the Lincoln Museum in Springfield, Illinois. I've heard really good things about it from lots of different people, so I put going to the museum on my "things to do this summer" list and hoped it would work out.

This past Wednesday I made that happen. I took a day trip to the museum with my mom and younger sister, Chandra. My van seats four people in addition to myself, so we also took my friends Kate and Hillarie. Springfield is about two hours from St. Louis, so it was definitely a doable distance for a day trip. My mom, Chandra and I met our friends about 9:45 and we were on our way by 10. We arrived just before noon and stayed at the museum for about three hours. There would've been so much to take pictures of, but photography was prohibited in much of the museum. I still got lots of nice pictures, though.
When you walk into the museum off to the left is a log cabin/forest area representing Lincoln's early life and to the right is the White House area representing Lincoln's presidency. You enter either of these areas and then progress through different rooms taking you through the journey of Lincoln's early life or his presidency. There are tons of things to read; you would have to spend hours and hours at the museum if you wanted to read everything. We just leisurely strolled through everything.
We also watched a short film about Lincoln's life called Lincoln's Eyes. This was a really neat experience because there were some really neat effects during the movie, like lights that simulated lightning, smoke that resembled gunshots/war and even vibrations under the seats and in the floor to really make you jump at dramatic parts. It was really neat! We also went to the holavision 3-D theater to see the "Ghosts of the Library" exhibit. That was really exciting, too, and left you wondering, "Was that real?" after it was over.
Lincoln was only president for four and a half years, and in that time he aged considerably. There were five pictures of Lincoln displayed on one of the walls in White House exhibit, one from each year of his presidency. It was very interesting to see the physical toll that being president of the United States during the Civil War took on him.

There were also lots of wax figures of the Lincoln family and other different people from that time period. I've never seen wax figures in person before and they were really neat. Most of them looked so life-like. There were also lots of other things on display to look at. One of the things that I thought was really neat was a picture that looked like George Washington from the front, but looked like Abraham Lincoln from the right side and Ulysses S. Grant from the left. (I didn't get a picture of that since photography was prohibited.)
Here are some other wax figures from history: the scoundrel John Wilkes Booth and Civil War heroes, Ulysses S. Grant and George B. McClellan:
 Sojourner Truth and Frederick Douglass:
This is Mrs. Lincoln's attic, a play area for children. I think it would be a lot of fun to play in if I were a kid:
I'm used to living in St. Louis where the admission to a lot of the museums and attractions is completely free. (Did you know that St. Louis has the distinction of being the #2 city in the country for having the most free things to see/do (second only to Washington DC)? The admission to the Lincoln Museum cost $12/person (which seems like a lot to my St. Louis mind) but the cost was well worth it and I can't wait to go back!

I love Abraham Lincoln so much and think he was an amazing man. He left such a wonderful legacy, and he's certainly one of our country's best presidents, if not THE best. I think he'd be ashamed of the things that go on in our political system in this day and age.
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