FAQs: Why the Trach?

Sometimes I get asked why I still have a trach even though I'm not dependent on a ventilator anymore now that I have my diaphragm pacer. There are several important reasons:

Even though I'm no longer on the ventilator, sometimes I still need to have my airway suctioned out when I get a buildup of secretions that make it difficult to breathe. On average I need suction a few times a day; sometimes more, sometimes not at all. It just depends on how much gunk I get in my throat/airway, or how bad the allergens are in the air. (I've needed to be suctioned a little more often this spring than I usually do because there must be more pollen and stuff like that in the air.)

When I get suctioned, we stick a thin suction catheter down my trach and suck out any secretions with a special machine. Maintaining access to my airway is a must because it would be difficult to suction without it.

One of the other main reasons I still have my trach is just in case I need to go back on a ventilator. This has only happened a couple of times since I got the diaphragm pacer back in 2006. (I think both of these times were when I was hospitalized and my body was too sick/too weak to just rely on my pacer alone to breathe for me. I temporarily needed a little extra breathing support until I regained my strength and could go back on the pacer.)

Keeping the trach is basically a backup or a precaution just in case something were to go wrong with the pacer. That's highly unlikely, but you never know, and it would be much easier to maintain an existing trach rather than having to do another tracheotomy down the road if I were to ever to need it.

I know the trach is another thing that kind of emphasizes my limitations and I wish it wasn't necessary, since it makes me look different. It's also something people sometimes ask about (usually kids), but at least I'm no longer on a ventilator, because that was even more noticeable. I hope this all makes sense and explains why I still have a trach.

FAQs: My Accident Site

One of my readers recently asked me a few questions that I thought I'd take the time to answer.

When I made my note to self post last month, one of my classmates that I went to nursing school with made a comment that she thinks of me any time she passes my accident site. One of my readers read that comment and asked me if I go by my accident site often, or if I purposely avoid it because of the memories. She also asked if it brings back memories if/when I pass it.

I don't pass the accident site all that regularly; probably only a handful of times each year. I don't go out of my way to avoid it, it's just not on my normal route to/from the places I usually go. It definitely doesn't bother me to pass it – I actually enjoy it because it brings back good memories of the time in my life when I was independent and going to nursing school – and when I do pass it I definitely think of my accident every single time. I always picture the accident happening, especially when I'm driving the direction that the girl who hit me was driving. I imagine the same scenario; running a red light at 50 mph and I try to think exactly what the collision would've been like. (I don't remember the accident at all, so that's why I'm very curious to know exactly what it was like, and everything I went through.)

[For those of you who live in my area, my accident happened at the intersection of 141 and 21 near Fenton, MO.] I was in the left turn lane preparing to turn left onto 141. I was stopped at a red light and was the first car in line and when the light turned green I started to go. That's when a driver going the direction perpendicular to me ran a red light and t-boned my car on the driver's side. Whenever my mom is driving and we get off at that exit she ALWAYS gets into the right turning lane (I was in the left lane), no matter what. It's not that she thinks lightning is going to strike twice, or anything, it's just something she started doing after my accident.

As always, I'm open to questions about anything that anyone might be curious about.

FAQs: My Diaphragm Pacer

When I was in my car accident, I broke my neck at the second cervical vertebrae, so the break was very close to the top of my spinal column. This meant that I lost control of all of the muscles from my neck down, including the diaphragm muscle in the abdomen that is used to breathe. So after my accident I was put on a ventilator—a machine that is hooked up to a person's tracheostomy tube (trach) and pumps a breath of air into the person's lungs a certain number of times a minute (approximately 12 to 14).

I was on a ventilator for the first three years after my accident, and I actually never thought I would ever get off of the ventilator. After my accident I heard about Christopher Reeve getting a diaphragm pacer and I knew that I'd like to get one, although I didn't think it would ever be a real possibility for me since they seemed so few and far between. However, I decided to ask my doctor about it anyway to see what she knew about them. She didn't know much, but she did manage to track down the name of the doctor who performs the surgery to implant the diaphragm pacer electrodes on the diaphragm. She called him to inquire about the diaphragm pacer on my behalf.

[A little background history on the diaphragm pacer: The technology of diaphragm pacing has actually been around since the 1970's, but at that time electrodes were placed on the frenic nerve. In 2000, Dr. Raymond Onders developed a method of laparoscopically implanting the electrodes used for pacing on the diaphragm itself, instead placing them on the frenic nerve. Dr. Onders' laparoscopic method of implanting on the actual diaphragm was much less invasive, and had other benefits, too, but don't ask me to explain them, because I'm no doctor!]

When I first inquired about the diaphragm pacer back in 2006, Dr. Onders was the only doctor in the world who performed the surgery. He practices medicine in Cleveland, Ohio, so after finding out that he was so far away from me (near St. Louis, MO), I pretty much gave up any hope of ever having this procedure myself since I really wasn't in any position to travel hundreds of miles to Cleveland.

About a week or so after I asked my doctor about the diaphragm pacer, my mom got a phone call from Dr. Onders. I thought it was impressive that Dr. Onders took time out of his busy schedule to answer all of my mom's questions—like what the diaphragm pacer was, how it worked and if I might be a candidate for one—and talk to her for over an hour. Everything sounded so promising, so we didn't have to think about it too long before deciding that we were going to do it! I knew it would involve a long road trip to Cleveland (10 hours one way), which was daunting since at that time we'd never attempted taking a road trip since my accident. However, getting a diaphragm pacer was too good of an opportunity to pass up, so we started formulating a game plan of how to make all of the logistics of travel and staying in hotels work. Just two months later we set off on our way to Cleveland. (My mom went with me, of course, as well as my youngest sister, Chandra. We knew that we would need another adult to go with us, so we called my older sister, Annette. She didn't have any children at that time, so she was able to come with us without having to leave a bunch of young kids behind, like my other older sisters.) 

I had the surgery to implant the electrodes on my diaphragm on November 17, 2006—the third anniversary of my accident. (I thought it was really cool that I was able to have the surgery done on the anniversary of my accident—what a wonderful way to celebrate my anniversary!) My mom, sisters and I were taught about the pacer and how I had to slowly condition my diaphragm muscle to be able to withstand pacing for long periods of time. (The diaphragm is a muscle, so it needed to be strengthened and gotten back into "shape" since I hadn't used it in three years.) The training process is kind of difficult to explain, so to make this long story shorter, I'll just say that everything was extremely successful, and I went from being 100% dependent on the ventilator, to transferring over to the diaphragm pacer 100% of the time in eight days. That was a record for the female patients at the time. I'm not sure if that record still stands, though.

People often ask if I have to go back on a ventilator at night, and the answer is no. I'm on the pacer 100% of the time and have been ever since I transitioned over to the pacer. (With the exception of one time when I was hospitalized due to complications that I experienced after having surgery to remove kidney stones, but that was just for a week while I regained my strength.) People have also asked if I can breathe without my diaphragm pacer (or ventilator) and the answer to that is also no. I am unable to breathe on my own, and am completely dependent on either a ventilator or the diaphragm pacer to breathe for me.

I've become much more adventurous since getting the diaphragm pacer. I wasn't very motivated to leave the house after my accident. I was happy and content to stay at home, since that was the place I felt the most comfortable. I didn't like going out in public unless it was absolutely necessary because I felt awkward out in public. I went to church every week and to doctor's appointments and occasionally to the store, but I really just preferred to stay at home.

After my accident I vowed that I would never go to Wal-Mart or the mall again. To me, that would've been the epitome of torture! I hated having all eyes on me, feeling like I was in the way of others as I tried to maneuver around tight, overcrowded aisles, all in addition to the thought that I might run into someone I knew before my accident. But over time I slowly started to venture out again and try new things. I was especially nervous the first few times I actually ate in restaurants or rolled through the mall and things like that. However, things got better as I went out more. I'm sure I would've gotten to the place of being more adventurous eventually, but getting off of the ventilator was definitely the catalyst. I just felt more normal-looking and confident, since there were no longer tubes going across my body that attached to the trach in the center of my throat, and no more ventilator to lug around, either. I know that I will obviously never look physically normal again, but ditching the noisy, conspicuous vent/tubes really did do wonders for my confidence, and it opened doors that I'd chosen to close.

I mentioned earlier that Christopher Reeve had a diaphragm pacer and that's where I first heard about it. Christopher was the third patient that Dr. Onders did this laparoscopic electrode implantation procedure on, and I was the 42nd. It was not FDA approved at the time I got it done, and I was actually part of the FDA study. Back in 2006, Dr. Onders was the only surgeon in the world who performed this surgery. After the diaphragm pacer became FDA approved more and more surgeons started doing this procedure, and now there are lots of surgeons that perform this procedure in dozens and dozens of hospitals/facilities all across the world. I'm happy that word of the diaphragm pacer is spreading so that more people like me can benefit from it and have a healthier, better quality of life.

The diaphragm pacer is made by Synapse Biomedical; visit their website to find out more information.

FAQs: Home Health Services

I recently received this question: 

• It doesn't seem from what I have read on your blog like you have nursing help, yet many disabled people qualify for a certain amount of free help from the state, right? It just seems like it must be a lot of work for your family, although I'm sure they don't mind.

So I thought I would make a post about my what sort of help I qualify for from the state, who cares for me and how we get by. 

Because of the magnitude of my disability, I qualify to have a paid care attendant six hours a day, seven days a week. (Each state is different, but the maximum amount of hours you can qualify for in the state of Missouri is six hours a day, seven days a week.) Other people who are disabled, but maybe not as severely might qualify to have a paid care attendant for two or three hours a day; it really just depends on how much assistance that person needs. Each person undergoes an initial evaluation to assess how much assistance they need, and then they are awarded a certain amount of hours per day. *As I said, each state is different. Some states award far more the amount of hours that I qualify for, or even pay for 24-hour care. But here in Missouri, six hours per day is the maximum amount of hours people can qualify for, no matter the severity of their disability. I'm not sure the rhyme or reason to it all, I just know that it differs on a state-by-state basis.

I think it's unfortunate that the maximum number of hours my state awards is only six per day, especially for someone like me who needs care 24/7 since I physically can't do anything for myself. I AM quite self-sufficient and don't need someone sitting by my side every second of the day (like when I'm working on my computer) but I still can't ever be left alone and always need someone within earshot so that I can call them when I do need help. Six hours a day only covers 25% of the time, but I guess I won't complain and just be grateful for the six hours that I DO qualify for!

One fortunate thing is that I'm able to hire my own care attendants, and they can be friends or even my own family members. If I like you and feel comfortable with you, and if you pass a background check and are willing to do the work, then that's really all there is to it! Being able to "hire" my own attendants is what enables my mom to be able to stay at home with me since she earns enough money to where she feels like she doesn't need to work outside of the home to make ends meet.

Don't let me fool you, what the state is willing to pay personal care attendants each hour isn't much money at all (the starting pay is $7.50 an hour and after three months you get a "raise" to $8 an hour, and after a year your pay tops out at $8.50). That's shameful, if you ask me, and the state really should be willing to pay care attendants much more ESPECIALLY considering the fact that I have the option of being in a nursing home. That would be FAR more expensive than paying someone $8.50 an hour, six hours a day, seven days a week. It doesn't seem quite fair, but like I said earlier in the post, I'm just grateful for everything I do qualify for. Although I wish there was more assistance available, we're able to get by which I'm truly grateful for because I don't know how we would do it if we had to pay for private duty nursing care and personal care attendants out of our own pockets.

When I started writing this post I asked my mom if she likes caring for me, or if she wishes that we had a staff of nurses and caregivers to be in charge of my care so that she had the freedom of doing her own thing whenever she wanted. She said that although it would be nice to have a little more help (especially in the case of if she gets sick or if she wants to take a trip to visit her parents or some of my other sisters), but for the most part everything is how we want it. Mom said that she loves caring for me and that she feels fortunate that she gets to spend her days with her best friend (a.k.a. me!). She also said that no one else would do as good of a job caring for me as she does, which I have to admit is very true! :) She knows my care far better than any licensed nurse or "professional" caregiver.

My mom said that her ideal situation would be to have all of her daughters live near us so that they could help shoulder the burden of my care. Unfortunately, most of my sisters live hundreds of miles away (my older sisters live in Texas, Mississippi, California and New York) so having them help is out of the question. It's too bad they don't live closer because it would be really nice if they could each help one day a week. The Lord obviously has a different plan for my mom and me, though, and that's okay because we're making it work one day at a time! 

FAQs: Potpourri

If you're a Jeopardy!  watcher then you've probably seen them have a category from time to time called "potpourri" which means "a little of this and a little that." Today's FAQ post is answering a bunch of questions that I've recently gotten from my readers, so I thought I'd lump them all together in one post.

When you eat, do you tell your helper what you want a bite of, or do they choose?

I definitely tell whoever's feeding me what I want to eat, when I want a drink, etc. The thought of my feeder just using their discretion to choose for me makes me shudder! I have such little control in my life, and eating is such a pleasurable thing (when done the right way). I can't imagine letting someone else decide what I eat/when I eat it. For me, that would be pretty degrating and it would take a lot of the enjoyment out of eating.

Have you considered getting one of those little assist monkeys (like a seeing-eye dog) that can help you out?

I've seen those assist monkeys on TV and I'm actually not quite sure how much assistance they could provide to someone in my position since I really can't move at all, and although monkeys are smart they aren't intelligent enough to be able to help me with my computer, etc.

This question makes me laugh because as cute as those monkeys are, I don't think I would enjoy having one. First of all, anyone who knows me knows that I'm not a pet person. I like animals and think they're cute, but only from a distance. I don't think I'd enjoy owning a pet (but maybe that's because we didn't have very many pets growing up, so I never had a pet that I developed a love/bond with).

And don't even get me started on pet hair, either (which I detest)! I've always found it so gross to go into a house of a pet owner and to sit on furniture that's covered in pet hair, or where you know a pet lives there because of the smell. Or where the person has cats that jump up on table/countertops. Or where the person's dog tries to jump on you, lick your face or sniff your crotch. I know this isn't the case with every pet owner and pet, but I just don't like them!

I was wondering if your sense of modesty has changed over time as you've had to get used to having other people help you with such private things? Has it gotten any easier, or are there things that still bother you?

When I was first injured it was very difficult for me to have people bathe me or see me naked (I'm sure most people can relate to this) and I always asked my mom to leave the room, which was just fine with her because it was uncomfortable for her, too. It didn't seem right to have her around for such an intimate/personal thing. After I left the ICU and went to rehab I quickly changed my thinking and always wanted my mom around when it was time to do my bath because she was the only one who knew me and she was my advocate/ally. I felt like she was really the only person that I could rely on.

Since that time things have definitely gotten easier, and it doesn't really phase me at all to have my caregivers help with my care any more. However, when someone new starts helping with my care (especially if it's someone I personally know) I do feel a bit awkward at as they learn the ropes. But once they learn the way things work it really isn't a big deal.

When I'm in the hospital and have to have surgery or have doctors and nurses care for me it doesn't really bother me to have people see me naked anymore like it did at first. I'm used to it and I know that the hospital staff is used to dealing with medical procedures and seeing naked patients all the time since that's what they do on a daily basis.

Why are you so susceptible to kidney stones as a paralyzed person? 

Since I'm not able to stand up and move around like normal people, urine tends to pool in my kidneys and it doesn't filter through them like it does in your average person. SO, that tends to lead to the formation of kidney stones, and in my case the stones that form in my body are infectious stones which are especially dangerous to me. This is why kidney stones are so detrimental to my health.

FAQs: Bath Routine

I recently wrote a blog post about how my hair gets washed, and this post is about my bathing routine. When I was first injured it was a surreal time for me as I realized all of the things that I would never  do again. One of these things was showering. I remember thinking, "Will I really never stand in the shower to wash my own hair/body again?!" It was such a normal thing that I'd done for myself almost every day of my life from the time I was a young girl.

I know that some paralyzed/disabled people have roll-in showers and shower chairs that they sit in (a chair that's made to get wet) in order to take care of their bathing/showering needs, but I don't. I'm sure we could've had some additional renovations made to our house since the downstairs bathroom is close to my bedroom, but I wasn't really interested in going the whole roll-in shower route. Bed baths might not be the most "high-tech" option out there, but my mom and I decided that that's what wanted to do for us and our situation.

We do a bath every afternoon. It really doesn't take too long; probably about 20 minutes from start to finish (including getting me back to bed, undressed and situated after we're finished). Depending on what day of the week it is, we either do my bowel program and a bath, or we just do a bath and then do some range of motion exercises. (Range of motion is exercises or stretches that help keep the muscles in my limbs flexible since I'm not able to move my body parts/muscles like able-bodied people do.)

Any other questions regarding the ins/outs of the life of a quadriplegic? If so, just leave a comment and ask your question, or send me an e-mail!

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:

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!"

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 with—even 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 one!), 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 first—who would—but 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.

FAQs: Pain

In yesterday's post I wrote about the pain I experience on a daily basis. Someone left me a comment and asked me why I experience so much pain when I can't feel. When someone breaks their neck or damages their spinal cord, it doesn't always mean that they lose all of their movement and sensation below their level of injury. No two injuries are like. Some people can't move but still have sensation, some people can move but don't have sensation, and a lot of other combinations of varying levels of being able to feel and move.

This is my personal experience: I have full sensation, head to toe, and I can also move a few fingers on each hand and I can wiggle my toes, but I don't have any movement that I can do anything "useful" with. Most people who have an injury as high up on the spinal cord as I do (second cervical level) DON'T have full sensation, so I'm pretty rare in that respect. Having so much sensation is definitely a blessing and a curse because on one hand it's nice to be able to feel if something is bothering me, but at the same time, I have a lot of physical pain which isn't fun to experience. (HOWEVER, even people who don't have sensation can still experience phantom pain in their limbs where they might not have sensation.

Neuropathic pain, or nerve pain is very complex and hard for someone to understand if you've never experienced it. Just know that paralyzed people can still feel pain even if they can't feel anything else.

FAQs: A Day in My Life

This is a post that I've been working on for several days. Sometimes people ask me what my day-to-day life is like. I guess some people have a hard time wondering what a person who can't move does do all day. So, here is a rundown of what a typical day in my life is like:

My day starts around 6 AM when my mom comes downstairs to give me my first round of pills of the day. (I take pills five different times a day for all sorts of things like, muscle spasms, pain control, kidney function, under-active thyroid, etc.) Then I go back to bed, although I usually don't fall back to sleep. This is my thinking time when I pray, daydream and think. (This is often the time where I get ideas for new blog posts.)

My mom comes back at 8 to start our morning routine. I eat breakfast, she washes my face and things like that. Then around 9 a neighbor or friend from my church comes over to help my mom dress me, wash my hair if it's a "hair" day (Tuesday/Thursday/Saturday) and get me up in my recliner. (If I'm staying at home all day I just sit in my recliner rather than my wheelchair because it's much more comfortable. If I'm going out, then it's the wheelchair for me!)

I'm up for the day by 9:30 or so. If it's a hair wash day, then my sister Chandra spends the next hour drying and flat ironing my hair. It's quite a process, but fortunately we only do my hair three days a week! After I'm up then I get on my computer and I work on my computer  all day until three or four in the afternoon when my mom and I start our afternoon routine, which includes my bath and other personal care.

My mom and I have dinner together around five. After dinner is over I get back on my computer. I'm really good at multitasking, and I spend the evening working on my computer while simultaneously watching TV. Or sometimes I'll work on my computer while my mom reads to me. Mom usually goes to bed around 10 PM, but I keep working on my computer until my sister Chandra comes home from work (anywhere between midnight and 2 AM). I really enjoy my evenings on my computer because I get a lot done and am quite productive.

This is what my weekdays are usually like. Sometimes Chandra and I go shopping or to the movies on Saturday since she's off on the weekend. The three of us always go to church on Sunday morning and then spend the rest of the day together. I love weekends because Mom, Chandra and I have fun hanging out together.

Here's a little bit about my caregivers:

The brunt of my personal care falls on my mom, as she is my main caregiver. I don't have a staff of nurses (too expensive), so it's basically my mom, my younger sister, Chandra and two family friends from church that each come over three mornings a week to help my mom get me dressed and up for the day. Here's a little bit more about what each of these people do for me:

Mom: my mom doesn't work outside the home and she stays home with me just about all day, every day. She gets out of the house on Tuesday and Thursday mornings to run errands, take care of things or do things that she wants to do while Chandra does my hair. Mom and I get along really well and we rarely disagree. We're each other's best friends and we really enjoy being around each other. (That's fortunate since we don't have another choice!)

Chandra: is my youngest sister and still lives at home. Although she has a full-time job she still helps our mom with a lot of my care. She puts me to bed each night after she gets home from work. (She puts my computer away, bushes my teeth, adjusts me, etc.) This works out well for us. My mom usually goes to bed around 10 or 10:30 and I like to stay up late working on my computer. My mom is free to go to bed since she knows Chandra will situate me after she gets home from work. Chandra also does my hair on Tuesday and Thursday mornings since she doesn't go into work until 2 PM. Chandra is off work on the weekends, so she helps our mom with my care on the weekends, too.

Linda and Kellie: two friends from church that live close by that each come over three mornings a week to help my mom get me dressed and up for the day. It would be impossible for my mom to get me dressed and up all by herself, so we really appreciate the assistance that these friends offer.

I've been paralyzed since 2003, and one of the uneasy feelings about my situation is not knowing where Mom and I will get the help we need on a permanent basis. However, the Lord is mindful of our needs and has always provided someone to help us. Several of my sisters have lived here for short periods of time and have been able to help our mom with my care. When they've moved on there's always been someone else to take their spot, or our circumstances have changed in some way so that we're still able to get by. I'm so grateful for the Lord and that He watches over me.

FAQs: SCI 101

SCI stands for spinal cord injury and most people don’t know much about injuries to the spinal cord unless they have one themselves, are closely related to someone who has one, or are in the medical profession. Most people who injure their spinal cord lose all movement AND sensation from that point down. For example, I broke my neck at the second cervical vertebrae and have now lost function from my neck down. (If you break your neck further down on the spinal cord, your body may only be compromised from the shoulders down, or the chest down. If you break your back, only your legs might be compromised.

I don’t have control of the muscles from my neck down, but I still have full sensation. My sensation isn't exactly normal, and it especially wasn't normal right after my accident. At first my body tingled all over and it felt like pins and needles were touching me everywhere. But as time went on, my sensations began to feel more and more normal as my body slowly came out of spinal shock. I’m really glad that I can still feel, even though that means feeling pain, because most people in my situation either can't feel, or have limited sensation. My sensation might not be 100% normal, but at least I can still feel from head to toe.

Although I can feel pressure and touch, I can’t feel temperature from my neck down. I know when I’m cold and I want a blanket on, or when I’m hot and I want a fan blowing on me, but I can’t sense the temperature of objects touching my skin. (If you touched me with a popsicle I would feel the pressure of the popsicle, but it wouldn’t feel as cold to me as it would to you.)

Something else interesting having to do with my sensation is that I don’t itch anywhere from my neck down. I’m thankful for this because itching on my face and scalp is torture enough since I can’t do anything to relieve the itch.

One downside to having sensation is that there’s a lot of pain that accompanies spinal cord injury, at least for me. It’s a different kind of pain that is hard to describe to someone who has never felt this kind of pain before. It’s called neuropathic pain, and it’s a burning pain that feels burning hot and icy cold at the same time. I feel the pain in my hands, bottom, lower legs and feet, although, it’s different for different people. Some days the pain is so intense that it borders on excruciating. Thankfully, I’m on a couple of medications that really help manage the pain. Every day without pain is a good one!

Another interesting thing having to do with my spinal cord injury is that all of my pain is worse on the left side of my body. It’s strange and I’m not sure why this is, but it’s another quirky thing having to do with spinal cord injury.