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 was.you.

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!

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 a 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 say 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 that enables me to use my computer is called a head mouse (made by a company called Natural Point). 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 I wear. When I move my head from side to side or up and down, the head mouse tracks the movement of the infrared sticker and moves the cursor on my screen. 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, leave a comment on Facebook, work on a Word document, etc., I just put the cursor in the right spot, and then I begin dictating. I can also set my Natural Point head mouse on what is called "dwell clicker" and that enables me to navigate around the computer without using my voice to issue commands at all. I simply move the cursor around the screen by moving my head, and when I want to click on something, I just stop moving the cursor for a second, and the computer knows to click when I do that. If I want to double-click, do a right click, or drag and drop something, I can easily change a setting so that the mouse does one of those things instead of a traditional single left click of the mouse.

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 anything like that, 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 envisioning, but I think I fare pretty well for the most part. My sister Chandra or my mom are usually the ones that take pictures for me.

Unless I have somewhere to go, I spend the entire day on my computer when we aren't involved with my personal care. I spend between 10-12 hours a day on it. Lots of people have asked me what I do when I'm on my computer. I can do anything that able-bodied people can, like e-mail, blog, Facebook, shop, work on various projects (like my family's annual year-end 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 really a 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 a smaller screen, I wouldn't be able to see things as well, so that's why I get the biggest laptop I can). Next is a close-up of my head mouse.

And here's a picture of me working on my computer:

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!

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 6^th/7^th/8^th 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!"

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 questions.you

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!