15 | "Silver" Anniversary

Today marks the 15th anniversary of my car accident, which means I've been paralyzed for 15 years. 15 years is a long time! I'm calling this my "silver" anniversary.

A couple years ago I read an article in Meridian (an online magazine) with an analogy comparing the trials and sufferings of mortal life to the process a silversmith uses to rid silver of impurities. This excerpt is kind of long, but worth the read:

In Malachi 3:3 we are told that the Lord “shall sit as a refiner and purifier of silver.” There are some great lessons here for us. For centuries, silversmiths would put broken, crushed ore into a fiery furnace and turn up the heat to melt off the impurities. Are we not broken, rough, and filled with impurities?

Silver experts knew which impurities would melt off at which temperatures. And the refiner had to be vigilant and watch carefully, because if the temperature got too high, the silver could be ruined. This is exactly how the Lord watches over us, with constant attention to the details of our lives. He knows every pain, every sorrow you feel—in fact, he took those upon himself in atoning for us. He also will not allow us to be tried beyond our ability to withstand it, if we turn to him for help.

But one of the most beautiful analogies in this process is how a silversmith knows when the silver is done—he sees his reflection in it. And Christ will see his reflection in us when all our impurities have melted away, and we have truly given our hearts to him.

When harsh challenges arise, we still have a choice. We can be as a wisp of paper thrown into a fire and quickly consumed, or we can choose to be silver, and allow that trial to refine us, and make us into something better than we were. We can sink into despair and self-pity, adopting the victim role, or we can be fearless and faithful, determined to triumph.

James E. Faust once said, “Here then is a great truth. In the pain, the agony, and the heroic endeavors of life, we pass through a refiner’s fire, and the insignificant and the unimportant in our lives can melt away like dross and make our faith bright, intact, and strong. In this way the divine image can be mirrored from the soul. It is part of the purging toll exacted of some to become acquainted with God. In the agonies of life, we seem to listen better to the faint, godly whisperings of the Divine Shepherd.”

If you are struggling with a problem (or several) right now, ask yourself: Am I going to be paper or silver? We get to choose.

So often people look at their less-than-ideal, challenging, or unfair circumstances and they just get bitter and angry, and fail to use it as a springboard for growth. Anger and bitterness are normal reactions, of course, and they are justified for a time, but after a while you just have to accept things and make lemonade out of the lemons life has dealt you. With the Lord's help, I have allowed the challenges I've experienced as a result of becoming paralyzed to shape me into a better person than I was in my pre-paralysis life. There's truly nothing like adversity to expedite personal growth! For this reason, I'm so grateful for my accident and all it has helped me become. I've always maintained that the worst thing to happen to me physically, was the best thing to happen to me spiritually and emotionally, and I'd never change things if it meant forgoing all of that growth.

So the next time something bad happens to you, just consider it your own time to become a little less like paper, and a little more like silver. 

The Itch You Can't Scratch

Spring is here and it's BEAUTIFUL in Missouri right now, but there is a lot of pollen flying around in the air. Those microscopic particles from the flowers and trees coat everything in a yellow film and make allergy sufferers miserable! I've never really had bad allergies or been especially sensitive to pollen, but I DO seem to be itching more lately. Spring = pollen = more itches, and saying that itches are a nuisance for someone who can't move is a major understatement!

Having an itch you can't scratch is actually pretty cruel. Pure torture! I distinctly remember lying in bed once when I was still able-bodied, thinking of poor Christopher Reeve and what it would be like to be unable to scratch an itch. I lay there with a fierce itch in my nose, and I held off scratching it until I thought I would go mad. When I couldn't take it any more, I scratched and scratched until I completely relieved myself of the itch. It is SO ironic thinking of that incident now! (This really did happen, by the way.)

There is really an art and technique to scratching an itch, and it's a lot more involved than you might think. If your nose itches, for example, you can't just have someone timidly scratch the end of your nose and have that satisfy your itch. The exact location they scratch matters, as well as HOW they scratch and the amount of pressure they use. All of this can be difficult to explain to someone, especially when you can't gesture or point to indicate how/what you want. For this reason, I ask very few people to help me scratch my itches (basically only my mom and my youngest sister, Chandra). I'm not sure what would be worse: the agony of the itch, or the frustration of trying to teach someone how to scratch the itch in a satisfying way. I choose to just suffer with the itch in order to spare myself–and others–the frustration and awkwardness of the whole thing! [I've found that making up code names/phrases for the particular areas of your face that itch frequently help give your caregivers a point of reference to know where to scratch.]

Thankfully, I only experience the sensation of itching on my face, eyes, scalp and ears, and not anywhere from the neck down. I'm not sure why I don't itch on the rest of my body since I DO feel other sensations below my neck. I won't complain, though, and neither will my caregivers. ; ) I can only take so much, after all! 

Holding steady

Last Wednesday I went for a bone density scan. When you're paralyzed and you aren't able to bear weight on your bones, they often become brittle and osteoporotic. My last scan was about two years ago, and it showed that I was losing bone mass, so my doctor put me on a medication that helps prevent this. Last week's scan showed that I haven't lost any additional bone mass in the last two years, so I'm holding steady, and that's a good thing.

You wouldn't believe all the ways being paralyzed compromises your body! It's crazy! So although holding steady means that I'm not as healthy as I once was, or as I'd like to be, I'll take it!

Cold and "a cold"

When you're paralyzed lots of things in your body don't work the way they're supposed to. The body's "thermostat" is one of the things that paralysis really affects.

Right after my accident I was always incredibly hot even though it was the end of November. Sometimes people would cover me up with blankets when I was asleep and I would wake up in the night burning up. I kept my hospital room in the ICU at a cool 65°F and sometimes nurses or other hospital personnel would change the temperature on the thermostat. Again, I would wake up in the middle of the night and be so uncomfortably hot, but I was unable to call for help or do anything about it.

Now fast-forward seven years from my accident. I still have major "thermostat" issues, but over the years they've gradually shifted to the other extreme. Where I once was always hot, now I'm always cold, except in the summer. From September to April I'm usually usually perpetually cold, even when the people around me aren't! When I feel cold it's so hard for me to get warm, even if I'm already under several blankets. I love having my face covered with a blanket because it helps keep me warm, and I often sleep with three or four blankets on me in the winter, with a blanket covering my face all night to keep me warm.

Another thing that helps keep me warm is having my head covered with a blanket. Sometimes people refer to me as "the flying nun" when I'm sporting my "blanket on the head" look. But what I always say is, "A girls gotta do what a girls gotta do to keep warm!" I know it's a comical thing to see, so I thought I would post three pictures from the past week of what I looked like when I was feeling cold.
Now to the portion of my post that I entitled "a cold."I'm remarkably healthy for someone who is paralyzed. I've only had two colds in the seven years since my accident. (Although I occasionally might get a sore throat, but that doesn't happen very often.) I got my first cold two years ago when I was around my sister Sharon's kids. My throat was very sore and I needed a lot of suctioning because there was so much fluid in my airway.

My sister Sharon visited this past week, and I got another cold from her kids! (A small price to pay to be able to see my nieces and nephews, though!) My cold has spread to some of the other people in the house, but fortunately it's only been the adults and not the kids. (Knock on wood!) It's a strange sensation to feel the need to cough, but to not physically be able to. I think I'm on the mend, but I will be glad when everyone in the house is feeling better and "cold free!"

Thoughts about babies and motherhood

Now that I'm at the age where I would be having children if I were married sometimes it hurts to think about not being a mother. There are so many things that I'll never be able to do and experience due to being paralyzed, and this is one of them. Almost every system in a paralyzed person's body is compromised except your reproductive system, so although I could still technically have a baby, I no longer have the desire.

First of all, I physically can't take care of myself, let alone a baby, so if I did have a child people would have to take care of my child as well as myself. This would be even more work for my family, friends and caregivers. Secondly, I would never want a baby that I couldn't hold and take care of myself. It would be excruciatingly painful to witness, especially when the baby was old enough to prefer other people instead of me. I'll just have to wait for the day in my next life when I am able to have children.

Here's a list of some other things related to pregnancy, motherhood and babies that I'm disappointed that I'll never be able to experience:

• Making the decision with my husband about how many children we want and deciding when it's time to start our family.
• Finding out the exciting news that I'm pregnant and telling my husband and family.
• Experiencing the changes that pregnancy bring to your body, both good and bad.
• Feeling the baby move inside me.
• Finding out the sex of the baby, whether I chose to have an ultrasound or wait for the delivery of the baby. (I don't know which I would choose because I think it would be so neat to wait until the delivery to find out the sex of the baby, but on the other hand, it would be so hard for me to be patient for nine months!)
• Experiencing child birth. I know it sounds crazy, but I think I would want to try natural childbirth at least once simply for the fact that I would want to know what women have gone through for thousands of years. Of course I've never been in labor, but I think I could/would do it. :)
• Experiencing that first mother/baby connection where your eyes meet and you realize that you've never loved anything more.
• Choosing a name for the baby. Baby names are one of my favorite topics to talk about with people; I think it would be so fun to be able to name a child.
• Being able to nurse my baby.
• Having a child that resembles my husband or myself, or was a mixture of the two of us. I would really want a little girl that looked like me. :)
• Being able to watch my child change and grow, develop and learn new things.
• Being able to teach my child things. I think this would be so exciting to know that I was the one who helped them learn whatever the skill was.

I hesitate to share these tender feelings, because I never want to come across as a bitter person, or like I'm trying to get pity from others. And I don't want my readers to feel uncomfortable. However, these are normal, natural feelings that I have, so I feel like it's okay to acknowledge them and write about them. I want people to know that I'm still human, even though I'm usually outstandingly joyful.

All Breaks Are Not Created Equal

I've always been under the impression that if you break your neck/back then you're doomed to be paralyzed. Not so! I'm often amazed at how many people break their necks or their backs, and they literally walk away from the accident unscathed. Or, sometimes people damage their spinal cords and they might be paralyzed for a short while, but then are able to regain most if not all of their movement after only a few short months of rehab. Truly, I've heard many stories about people who to damage their spinal cords and don't become paralyzed. The extent of the damage definitely depends on a case-by-case basis.

When you damage your spinal cord you'll most likely become a quadriplegic or a paraplegic depending on where the damage occurs. If someone breaks their neck at one of the top vertebrae on the spinal column (like me) they're going to have a lot less mobility than someone whose break occurs at a vertebrae further down on the neck where they're going to have a lot more mobility. I know that this is kind of confusing for someone who isn't familiar with spinal cord injuries to understand, so to clarify, you're considered a quadriplegic if you don't have full dexterity of your fingers. You might be a quadriplegic who's paralyzed from the neck down, or you might be a quadriplegic who has full use of your arms, just not the ability to straighten their fingers out. Regardless of whether you're the former, the latter or somewhere in between, you're considered a quadriplegic unless you can straighten your fingers. (There's just a big difference in the abilities of quadriplegics.) How'd I do? Does that make sense?

Purple feet

Sometimes when I wear flip-flops or shoes that show my feet people will notice that my feet have a slightly purpleish hue, and they'll say something like, "Oh, your feet must be so cold!" No, they aren't cold, thank you very much! I just have poor circulation, partly due to my spinal cord injury and partly due to the fact that I'm always in a sitting position and I'm not up walking around, so the blood tends to pool in my feet. I know that people are only concerned for me, but I can't help but feel slightly irritated when people worry about my "cold feet." When people ask me if my feet are all right I liken it to asking a pregnant woman if she's carrying twins because she's so large.

So yes, my feet may appear slightly purple, but I assure you they are just fine!

In the hospital...AGAIN!

I've definitely been MIA on my blog lately, but I have a good excuse... I've been in the hospital again. That makes three times this year, and I was so hoping that 2010 would be a hospital free year just like 2009 was! No such luck! Here's how everything went down...

I had surgery on April 5 to remove the kidney stones that were in my left kidney. The surgery went well and the urologist put a stent in my kidney to help it drain. (A stent is a small tube that goes from your kidney through your ureter to your bladder, and it helps everything drain after a procedure.) I had to get the stent taken out about two weeks after surgery. Fortunately this is something that can be done in the doctor's office, but I always dread it because it involves an uncomfortable and yucky procedure. It's not exactly painful, just really uncomfortable.

The appointment to have my stent taken out was Friday, April 23. Everything went well and I thought I was good to go. When I got back into my wheelchair I noticed some slight pain in my kidney, but I wasn't concerned about it considering that I'd just had a tube removed from the inside of my kidney. My mom and I left the office, and we probably should've gone straight home, but there was a church activity that I really wanted to go to, so we went to get a bite to eat before the activity started.

As the evening went on, the pain in my kidney intensified. The activity ended around 8:30 pm, and although I really wanted to socialize with my friends, I decided to go straight home. By the time I got home around 9 I was in intense pain. I decided to take a sleeping pill so that I could get a good nights sleep, and I fell asleep shortly after 10.

I thankfully slept well (which is rare for me) and when I woke up the next morning all of the pain in my kidney/lower back was gone. I was relieved that the pain had gone away, but I noticed I was much groggier than usual and it was hard to wake up. I was determined to get going, though, especially since I had big plans that day. My younger sister Chandra started working full time earlier this year, so she works almost every Saturday. I'm happy she has a job, but I miss hanging out with her and our friends on the weekend. To make a long story short, Chandra was off work so we were going to go to the movies for a double feature. Some people might not like sitting still for two movies back-to-back, but I was excited since it had been two months since I'd seen a movie at the theater.

I'll write about the movies in another post, but let's just say that I'm going to have to see both of these movies when they come out on DVD because I slept through a good majority of both of them! (Good thing I didn't pay to see them!) I got home and continued to get more and more tired. I had no appetite and absolutely no desire to eat anything for dinner -- something else that is also rare for me since I only eat two meals a day.

As the evening progressed it became apparent to my mom and Chandra that I was "going down." Around 7 in the evening I told my mom that I was feeling really badly. I was extremely lethargic, I was repeating myself and I couldn't keep anything straight. These are clear signs from my past experiences that I am becoming septic. My mom and Chandra got me ready to go to the ER at Barnes and we left.

When we arrived at the ER, my mom checked me in at the front desk and told them that my vital signs were all over the place. (My heart was racing and my pulse was about 125/sec, I had a fever, my blood pressure was dropping and the oxygen saturation in my blood was in the low 90's.) I was taken back right away, and this was the last thing I remembered for a few hours.

The long story short is that things got stirred up the previous day when my urologist took the stent out of my kidney, so an infection had begun to brew in my body. I'm not sure how the infection gets into my bloodstream, but once it does, it doesn't take long to start taking over.

I spent the next four days in the hospital. The first 48 hours we were waiting for the blood cultures to come back to see what bug I had and what drugs would be resistant to it. I was disappointed, but not shocked to find out that the antibiotic I needed to fight the infection had to be administered intravenously. (I was hoping for an oral antibiotic, but I was expecting an IV antibiotic.) The next hurdle was getting some kind of line started so that we would have access to my veins so that I could do my two weeks of antibiotics at home. This was easier said than done. A picc line in my arm wasn't an option this time, so I had to get a central line put into the subclavian artery in my chest. Getting a central line is much more invasive than getting an IV or even a picc line, but fortunately they were able to get it done on Wednesday morning without too much trouble.

Although I was only in the hospital for four days, it felt like a lot longer. I was first told that I could go home on Monday night. That turned into Tuesday and Tuesday turned into Wednesday. I was on a normal patient floor, so either my mom or my sister had to spend the night with me each night. Thankfully I was in a big enough room so that they could have their own hospital bed to sleep in. Even still, it was a lot of extra work for them.

I came home on Wednesday evening and it feels great to be back home! I really could use a nice, long break from being hospitalized. I'd like a good 18 months before being hospitalized again! 18 months isn't long, but I'm only being realistic since I know that I'm going to be plagued with kidney stones and other urological problems for the rest of my life! I can't complain, though, because I'm really very healthy for someone in my situation. I know my health could be so much worse than it is.

Glad to be back home doing the things I love!

How it went...

I had my surgery on Monday to remove the kidney stones that were in my left kidney. My surgery was scheduled for 1:30 pm, so I had to be at the hospital at 11:30. I was checked in right away and taken upstairs to the pre-op area. I was transferred from my wheelchair to a gurney, and then I was undressed and put into a ultra-chic hospital down. After all of my vital signs and initial information was taken there was a lot of down time where I was just waiting. Fortunately, my mom brought along the book we are currently reading for our book group, so we were able to make quite a bit of progress in our book.

The anesthesiologist came in shortly after 2 pm and put some medicine in my IV, and after a few short minutes I was out of it. Although I was still conscious, this is the last thing I remembered and my mom said that I was "flying high." I was taken to surgery about 2:15 pm, although the surgery didn't really get underway until 2:45. My mom got a call from my urologist a little before 5:30 pm and he said that things had gone well, but he'd had a little bit more trouble getting the stones out then he'd anticipated. (There were several kidney stones -- one big one and lots of small ones.)

My doctor wanted me to stay in the hospital overnight just to make sure I was recovering well, since in the past I've developed major complications. I was taken to my hospital room about 6:50 pm, and although it wasn't a room in the ICU, it was a nice, large room. (The reason I always like to stay in the ICU is because that's where I get the best care. The nurses in the ICU only care for two patients, so they can devote a little more time to each of their patients. The nurses on regular floors care for five or six patients apiece, so a lot of times my needs get overlooked since they are so busy.)

My mom had decided beforehand that if I had to stay on a regular patient floor she would stay with me to make sure I was well cared for. When my nurse found out that my mom was going to be staying overnight with me, a hospital bed was brought in for her to sleep on. My sister Laura and her husband Brett came to visit in the evening, as well as my sister Chandra.

Although I was quite tired, I still had a hard time sleeping through the night. It was harder to get comfortable, and people kept coming in my room to do different things to me, so my mom and I kept getting woken up. However, we were both able to get quite a bit of sleep, all things considered. I was just so grateful to have my mom/advocate there with me in the hospital.

One of the urological residents that works with my urologist came to check on me the next morning at 6:15 and told me that everything looked good and that I could go home that day. I was dressed and ready to go home by 9:30. In my past hospital experiences the discharge process has taken all day, so I was pleasantly surprised to be on my way home by 10:30.

The drive home from Barnes Hospital takes about 40 minutes, plus my doctor prescribed an antibiotic, so we stopped by Walgreens to get it, and my mom had to wait about 30 minutes for it. I was quite tired (you usually are when recovering from anesthesia) so I slept the entire way home, including the wait at Walgreens! Actually, I slept most of the day yesterday. Anytime I would try to watch TV or have my mom read to me, I would fall asleep!

So long story short is that I survived another surgery! I didn't make my 2010 goal of not being hospitalized, but hopefully I will make it the rest of the year and a good portion of next year before anything goes amiss with me.

Surgery is finally set!

I met with my urologist last Friday and I was hoping to be able to schedule my surgery after the appointment, but we found out that the nurse that schedules the doctor's appointments wouldn't be available to talk to until Tuesday. This was frustrating because I'd have to wait another four days to schedule the surgery. I'm the kind of person who likes to plan things out well in advance, so I've kind of felt like I've been in limbo for the past month knowing that this surgery is something that I need to get done, but not knowing when it's going to be.

My mom was finally able to talk to the nurse this morning, and my surgery is finally set for April 5. The surgery to remove kidney stones is usually an outpatient procedure, but my urologist knows how tenuous my health is, so he's not taking any chances and is keeping me overnight in the hospital. (He always reserves a bed for me in the ICU, but sometimes I get kicked off the list if there are patients who need to be in the ICU more than I do. I guess I'm not the hospital's top priority!)

I'm so excited to finally have my surgery on the books. I can't wait to have these kidney stones removed so that I can get back to normal! I'm really sick of having a tube coming out of my back so that my left kidney can drain. It's uncomfortable and I don't like lying on it! It will also be nice to be able to get the picc line out of my arm. A picc line is kind of like an IV, except it's more long-term and you can keep it in your arm for six to eight weeks. (Instead of a needle going in to your vein like an IV does, a picc line is a thin catheter that goes through an artery almost all the way to your heart.) I'm ready to have it pulled out because it makes my arm hurt!

I'm hoping everything goes well so that I can come home the next day. I hope that I recover quickly because I've got big plans to go to The Cheesecake Factory for the first time the following Saturday!

Optimistically crossing my fingers!!

Not again!!

Last Monday started out like an ordinary day. It was a new day, a new week and a new month. I was excited to get up in my recliner so that I could get to work on my computer. I had several emails to catch up on, and I also wanted to update my personal journal as well as make a new blog post. Once I got up in my recliner, however, I noticed a dull ache in my lower back on the left side. I wasn't sure what was causing the pain, but I thought maybe some of my clothing was too tight or something like that. The pain got worse and worse as the day progressed, and I didn't feel like doing much of anything, which is highly unusual for me because I like spending all day on my computer.

As the pain increased, I also began feeling like I couldn't draw a deep enough breath. I'm not able to breathe on my own, but I've been on a diaphragm breathing stimulator for the past three years, and this has enabled me to stay off of a mechanical ventilator. As the day progressed, I began feeling more and more sleepy, and I knew that I was starting to repeat myself and say things that didn't really make sense. My mom said that she thought she should take me to the emergency room, and I agreed. I hate going to the hospital, but I could tell that something was wrong with me, although I wasn't sure what it was. My mom started getting things together and she called my younger sister Chandra at work and asked her if she could come home a couple of hours early.

When Chandra arrived home about 30 minutes later I was all ready to go. It was about 3 pm, and my mom and sister Chandra took me to the emergency room at St. Anthony's Hospital and we got checked in. The emergency room was absolutely packed, especially with lots of people carrying around barf basins! I waited in the waiting room for more than three hours, and the infection that was festering inside my body started taking over. I was trying so hard to mentally stay with it, but then I got to a point where I was so sick that I just had to mentally give in to the infection. I kept asking the same questions over and over again. I wasn't aware that I was doing this because I couldn't remember if I'd actually asked the question, or if I'd just thought it in my head.

Here's another example of how downhill I was going. I was drinking a milkshake since it had been about nine hours since I'd eaten anything. I was able to suck the milkshake up through the straw, but then I would actually fall asleep before I could swallow it, and it would run out of my mouth onto my shirt. That's how sick I was, I couldn't even swallow my milkshake! My mom knew that I was having a definite change in mental status, so she went to the front desk and told the receptionist that I was starting to act the way that I've acted in the past when I've been septic. (That's when an infection gets into your bloodstream, and if you aren't treated quickly it can be a life or death situation.) When my vital signs were retaken it was clear just how much I had deteriorated in the three hours that I'd been waiting. It was clear that I was seriously sick and they got me in to the next available room.

By this time I was so delirious that I don't remember much of anything. My blood pressure had plummeted dangerously low, something like 50/30. I'm not sure when the doctors found out that a kidney stone was what was causing me to be so sick, but when I heard those two horrible words, "kidney stones," I knew that things were not good. A kidney stone had entered my left ureter, so my left kidney wasn't draining at all. Ever since I've been paralyzed (6+ years) I've had reoccurring problems with kidney stones since my kidneys don't drain as efficiently anymore since I can't stand up.

To help make this long story shorter, I'll just try to talk about the most relevant things that happened last Monday. When they found out that my left kidney wasn't draining, I had to have a procedure to drain the kidney. I'm not sure what time of night it was when they took me away to get this procedure done, but I was put on an operating table and I was turned onto my right side so that the doctor had access to my left kidney.

Because my blood pressure was so low it was too dangerous to use anesthesia, so I was put under conscious sedation. Conscious sedation is basically where you're given a little something to make you foggy and fuzzy, but you're not unconscious. I cannot express how badly the procedure hurt! The doctor put a nephrostomy tube in my back, and the best way to describe what was done is that they drilled through my back to get to my kidney. Then a tube was inserted into my kidney to drain everything out of it. Then they secured the tube in my kidney with a few sutures, and now I will have this drain in my back until after I have surgery in a few weeks.

Since I was conscious during the procedure, I felt everything! I can't put into words how painful this procedure was -- I've never been through anything more physically painful than this procedure. I kept saying "ow" and "that hurts" but all they would say to me is, "I know it hurts." I was so relieved when it was over!

I was still delirious after my procedure, and when I finally woke up I was in the ICU. I don't remember this, but my mom said that I kept calling her name over and over again. I didn't know I was calling her over and over again, but when I woke up I couldn't see her and I didn't know where she was. Actually, I woke up burning hot, horribly parched and very confused. I knew that I was at the hospital, but I didn't know where in the hospital and I didn't know how much time had passed, if it were night or day, etc.

When I was coherent enough to form logical thoughts and questions again, I couldn't believe that I was having more kidney stone related problems. I'd just been to my urologist three months previously, and he said that although I had a few small stones in each kidney, they hadn't gotten any bigger and no new stones had formed. So although I shouldn't have been surprised that I had more kidney stones, I actually was surprised. I remember thinking, "No, not again!!"

I was feeling better and more like myself on Tuesday morning and I started to ask, "When can I go home?" Sadly, it wasn't this easy and I resigned myself that I would have to be in the hospital for several days.

I didn't bounce back as quickly as I have in the past, and this was very frustrating. I was put on a ventilator because I wasn't getting enough air from just being on my diaphragm stimulator like I usually am. Every time I tried to get off of the ventilator and just use my diaphragm stimulator, I started feeling like I wasn't getting enough oxygen to my brain, and a horrible headache ensued. For the next four days I tried turning off the ventilator and tried breathing with my diaphragm stimulator, but every time I tried I just couldn't do it and this was so frustrating because I knew I had to be off of the ventilator permanently before I could even think about going home. I've gone through the same thing in the past, and it was no problem to get off the ventilator, so I didn't know what was different this time. Thankfully on Saturday afternoon I turned a corner and I was finally able to be off of the ventilator without feeling like I wasn't getting enough air. Finally!! (The reason it was so hard for me to get off of the ventilator was because the infection was so strong and my body had gotten so weak.)

On Monday morning when my pulmonologist made his rounds I told him that I was ready to go home and he actually agreed. Now I just needed to get all of my other doctors on board, which wasn't too difficult to do. The hospital is the absolute worst place a patient can be when they are trying to recover since there is such a high risk of acquiring a secondary infection because of all the germs in the hospital.

So here I am. It's Wednesday afternoon and I've been home for almost two days. I have to be on IV antibiotics for two more weeks to make sure the infection is completely gone. Once the infection is cleared up I will have surgery to remove all of the kidney stones from my kidneys. That surgery will take place in about two or three weeks. I'm really not looking forward to the thought of having another surgery and hospital stay, but at least the kidney stones will be taken care of. It's too bad that it's not a one step fix! Unfortunately, kidney stones and other urological related problems are going to be an inevitable recurring thing for me to deal with since I have a spinal cord injury.

This post kind of tells the story of what happened last week. In another post this week I'll write about some of my feelings about being in the hospital and what it's like to be a patient. I'm so glad to be feeling better and most importantly, I'm glad to be home!

More about rehab...

The patient census at Shepherd changed often, but for the most part when I was at Shepherd there were usually between eight and 10 patients in the young adult group. (There was an adult group of patients and a young adult group. Shepherd didn't really accept patients who were younger than 12.) I was the only girl and the only quadriplegic for most of my seven weeks at Shepherd. The rest of the patients in the teenage group were boys who ranged in age from about 14 to 17. They were injured in various ways; one was injured in a bicycle accident, another was injured by a gunshot wound and I know there was at least one other car accident. Another girl was admitted about a week before I went home, and she was a C1 quadriplegic (that's as paralyzed as you can get...I am a C2). She had been stabbed by her boyfriend. She was 21 and had a little girl; I remember feeling so badly for her and her daughter.

My favorite part of the day at rehab was when the mail cart came through...usually between 4 and 5 PM. My family and friends were so good about remembering me and keeping in touch with me. I got lots of mail/packages, and it made me so happy to have my mom read the cards and letters to me. I also had a speaker telephone in my room, and although I couldn't talk loudly enough for my friends/family to hear me, I could talk to them through my mom, and hear their responses. (I would mouth things to my mom for her to tell the person on the other end of the phone, so I was able to talk to people that called in a roundabout.) The sound of their voices was so heartwarming!

I got so sick of eating the same hospital food every week. I was still getting supplemental feedings via my feeding tube every night, so if the food on my dinner tray didn't appeal to me, then I just ate however much or little I wanted, and I knew that I wouldn't be under nurished with the nightly tube feedings.

This leads me to another part of the day that always cheered me. Like clockwork, every evening around 7 PM, a lady would come down the hall with a cart of snacks and yell, "snack cart!" At first I wasn't really interested in eating anything from the snack cart, but as my appetite returned, I looked forward to getting some sort of treat...usually chips. Knowing that the snack cart would come around every evening gave me something to look forward to, especially if dinner hadn't been appealing!

I had an hour of physical therapy and an hour of occupational therapy every weekday. My mom and I were taught different stretches for my arms and legs called "range of motion" exercises that we needed to do on a daily basis so that my muscles would stay limber and not get contracted. Another thing that I'd sometimes do during my hour of occupational therapy would be to paint with my mouth. The purpose of this was to be a form of exercise for my neck so that I could gain more strength in my weak neck muscles. A paint brush was taped to a mouth stick (something I held in my mouth) and then I would gently glide the paint brush over paper. My occupational therapist obviously had to be right there with me so that she could reposition the easel that held my paper, and also dip my paint brush when it ran out of paint. The pictures I painted were quite amateur, but painting did force me to stretch my weak neck muscles. My occupational therapist, Rashida, and myself with one of the pictures I painted

My occupational therapist, Rashida, and myself with one of the pictures I painted.

Painting of Shepherd Center's "helping hands" logo (left).

Recreational therapy was another thing I was required to participate in while at Shepherd Center. The purpose of this was to take outings into the community so that the patients could learn how to tackle the logistics of go out in public as a disabled person, which is easier said than done. The first outing I took was to the mall, and had lunch in the food court. After lunch I went to see Cheaper by the Dozen at the mall's movie theater. My mom came with me, as well as my entourage of nurses and therapists. (It truly was an entourage, because five or six Shepherd employees accompanied my mom and me.)

I hated my outing! I wasn't used to being stared at and being so different, so it was a horrible feeling to have all eyes on me. It wasn't until I was in the dark movie theater that I started to relax. I realized that this was my new reality, so I better get used to it, but I didn't like it, and was so relieved to get back to my room at Shepherd. 

My first venture into the world as a disabled person.

Learning a new normal

In my last post I wrote about leaving for rehab in Atlanta with my mom. It was important that I go to rehab so that I could learn to live as a disabled person, and also so that my mom and I could learn how to take care of my specialized needs, so that I could have the best quality of life possible.

We left for my rehabilitation at Shepherd Center on Wednesday, January 7, 2004. I had to spend my first few days in the facility's ICU since I was a ventilator dependent patient. During this time a physical therapist came to see me as well as one of the wheelchair technicians. They got a temporary wheelchair ready for me that I could use while I was in rehab. This wouldn't be my permanent wheelchair, but it would be the chair I would use while in rehab. (I would ultimately have my own chair built for me and it would be customized and personalized to suit me and my preferences. I had choices between different things like various headrests, armrests, backrests, and of course, color.)

The real work in rehab started the Monday after I arrived. I started a "weekday routine" which started at 7 AM each morning when the techs (nurse's aides) came in to give me a sponge bath and get me dressed. No more hospital gowns, which is what I had been wearing for the past seven weeks while in the ICU. I was no longer able to dress myself since I couldn't move any of my body parts from the neck down, so the techs had to physically dress me. I was a grown adult, so this was easier said than done and it involved a lot of pulling, tugging and rolling my body from side to side to get the clothes on. I no longer wore any sort of collar or brace around my delicate neck, so I hated having to have my body turned from side to side and moved back and forth because it hurt my weak neck.

Every day I had an hour of occupational therapy and an hour of physical therapy. I enjoyed getting out of my room and going down to the gym where the patients had therapy. I still couldn't talk, so it was frustrating trying to have any sort of conversation with anyone because it was very difficult for people to read my lips. I really enjoyed my occupational therapist, Rashida, because she was young (26) and had gone to occupational therapy school at Washington University in St. Louis. Not only did we both have a connection to St. Louis, but we had several other things in common, too. Talking to her made me feel normal.

There were also classes that my mom and I went to. In these classes we were taught about spinal cord injury (sci) and the effects that spinal cord injuries have on the body. We were taught the importance of skin care and turning/repositioning the body every few hours to make sure that I wouldn't develop pressure sores (or bedsores, as they are most often called). I lost all bowel and bladder functioning after my accident, since the muscles required to go to the bathroom were now paralyzed. We learned different ways people could take care of these needs, depending on whether you were male or female, and what your level of injury was. We also learned the best way to do a bath in bed and also the easiest way to wash my hair. None of these things were exactly fun to learn and figure out, but since I wasn't going to be getting any better, these things were necessary to learn so that I could have the most comfortable, healthy and productive life possible.

I also had assistive technology classes where the patient's were shown some of the different types of assistive technology available to help disabled patients do different things, depending on what their limitations were. Since I still wasn't able to talk at this time, voice recognition programs for things like computers weren't an option for me. There was a system on one of the computers called a Darci system, where you hold a special sip and puff straw in your mouth, and then you would be able to write words through Morse code. Each letter is made up of a series of dots and/or dashes in Morse code, and to make a dot you had to gently sip on the straw, and to make a dash, you would gently blow or puff through the straw. Making each letter involved several sips and/or puffs to make the different dot/dash combination for each letter.

Here's an example of how you would type out the name Heather using this system: H: .... (four short sips on the straw), E: . (one short sip), A: .— (one short sip and one short puff), T: — (one short puff), H: .... (four short sips), E: . (one short sip), R: .—. (one short sip, one short puff, one short sip). As you can see, it was quite a tedious process trying to make just ONE word, let alone an entire sentence. The process was time-consuming, but it got easier and faster the more I did it. Although it was painfully slow, it was something I could do all on my own. A small peace of independence.

Here I am using the Darci system to type an email.

Trip to the urologist

Yesterday I went to the urologist. I had to get a few x-rays of my kidneys, ureters and bladder prior to my appointment with the doctor. Getting these x-rays never thrills me because I have to get out of my wheelchair so that I can lay on the hard x-ray table -- not comfortable, especially on the tail bone! After I got back in my chair we went to see the doctor. We had to wait 45 minutes, but once I got in to see the doctor things quickly. He pulled my x-rays up on the computer in the room and took a look. Good news: I haven't developed any new kidney stones, and the two small stones in my left kidney haven't gotten any bigger in the past six months. I know it's risky saying this, but I think I'm going to make my goal of not being hospitalized at all in 2009.

Kidney stones are inevitably going to be a problem for me, as they are for most people with spinal cord injuries. Your kidneys don't empty near as efficiently when you can't stand up, so stones form much more easily.

The reason I made the goal not to be hospitalized at all in 2009 was because I was hospitalized twice in 2007 and twice in 2008, both due to complications with kidney stones. In 2007 I had two large kidney stones (one of them was an inch and a forth long) and they were both infected. My doctor went in through my back to remove the stones and the surgery was much more difficult than he anticipated and a lot of infected stuff got stirred up in my blood in the process. I was terribly sick for the next 10 or so days. I was delirious and I wasn't responding to antibiotics.

Sometimes I would talk to people who weren't there, or other times I would just stare blankly into space. There was one day when I chanted, "Leave me alone!" any time anyone would try to talk to me. (Including my family and friends, and even my my own Mom!) Even when no one was talking to me I was still mouthing those same words. To make a long story short, after about 10 days of being delirious I finally "snapped out of it." All of a sudden -- about the span of one day -- I just started acting like myself again. (That might not seem like all of a sudden, but it pretty much was considering where I was coming from.)

I had absolutely no memory of the things that I said and did while I was consumed with delirium, but I do remember having nightmare after nightmare and feeling absolutely tormented. I laughed when my family and friends would tell me the things I said and did, although I knew it really wasn't a laughing matter, especially since my doctor couldn't figure out why I was delirious for so long.

When I met with my urologist for a follow-up visit a few weeks after returning home from the hospital, I asked him just how close to death I'd actually been, and he said that I was "teetering" on the edge (of life and death) and that it could have gone "either way." It was sobering to realize just how sick those kidney stones had made me.

So now, although I don't look forward to getting x-rays and seeing my urologist, I know that it's worth it so as to try and avoid kidney stones and the complications they can bring.

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.

Diaphragm pacer = more adventure

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 16.)

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 have 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 track down and call the doctor who performs the surgery to implant the diaphragm pacer electrodes on the diaphragm.

(A little background history on the diaphragm pacer: Although the technology of diaphragm pacing has been around since the 1970s, Dr. Ray Onders didn't start doing these surgeries until 2000. He developed a method of laparoscopically implanting the electrodes used for pacing on the diaphragm itself instead placing them on the frenic nerve as had previously been done.)

When I first inquired about the diaphragm pacer, 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 (in St. Louis), I pretty much gave up any hope of ever having this procedure since I really wasn't in any position to travel hundreds of miles.

Mom got a phone call from Dr. Onders a few days after my docter called him to find out some information about the pacer. Mom and Dr. Onders talked for about an hour, discussing what the diaphragm pacer was, how it worked and if I might be a candidate for one. Everything sounded so promising, so we didn't have to think too long before deciding that we were going to do it. It was daunting since we'd never attempted taking a road trip since my accident (and Cleveland was 10 hours away), but getting a diaphragm pacer was too good of an opportunity to pass up, so we started formulating a plan of how to make things work. Two months later we set off on our way to Cleveland.

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 family 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 completely dependent on the ventilator to being on the diaphragm pacer 100% of the time. It only took eight days to completely transition over to the diaphragm pacer which was a record for the female patients at the time. (Although, I'm not sure if it still is not.)

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 since getting the pacer in 2006. (Except for one time when I was hospitalized due to complications that I experienced after having surgery to remove kidney stones.)

Now to the part about becoming more adventurous... I wasn't very motivated to leave the house after my accident. I was happy and content and I liked being at home. I didn't like going out in public unless it was absolutely necessary because I felt awkward out in public. I would go to church every week, to my doctors appointments, occasionally to the store or things like that, but I preferred to stay at home because it was my favorite place to be.

After my accident I vowed that I would never go to Wal-Mart or the mall again. To me, that would have been the epitome of torture. I would hate having all of those eyes on me, feeling in the way, having to try to maneuver around tight, overcrowded aisles, all in addition to the thought of running into someone I knew before my accident. But over time I slowly started to venture out and try new things. I was especially nervous the first few times I actually ate in restaurants, rolled through the mall and things like that, but things got better the more I went out. I'm sure that I would've gotten to this more adventurous point eventually, but getting off the ventilator was definitely the catalyst as it made me feel more confident. (I felt more normal looking since there were no longer tubes attaching me a ventilator.)

I mentioned earlier that Christopher Reeve also had a diaphragm pacer. He was the third patient that Dr. Onders did this procedure on, and I was the 42nd. At the time I got this procedure done, Dr. Onders was the only surgeon in the world to perform this surgery. After the diaphragm pacer became FDA approved more and more surgeons started doing this procedure and now there are dozens of surgeons that perform this procedure in more than a dozen facilities all across the United States and Canada. I'm so happy that word of the diaphragm pacer is spreading so that more people like me can have a better quality of life.