20/20

Last Friday I went to the eye doctor for my annual eye exam. It was very fortunate that I went in when I did because I had an eye infection on my left cornea called an infiltrate. I was a little surprised since I hadn't been experiencing any pain, vision loss or anything like that. My doctor estimated that the infection had only been going on for a week or so and was a result of sleeping in contracts. (For the past six years I've been wearing the Focus Night & Day lenses that you can sleep in.) My doctor said that she doesn't want me to sleep in my contacts anymore, so that's disappointing because that means my mom will have to take them out every night and put them back in every morning. This isn't a big deal, just an annoyance. Oh well, I know I've got to take care of my eyes.

One silver lining about this eye infection and not being able to sleep in my contacts anymore is that it's a good excuse to get new glasses. I've had the same glasses for the past 10 years, so I think it's time to upgrade to something that's a bit more current. Plus, my prescription has changed considerably in the past 10 years, so I can't see well out of my glasses at all!

Yesterday afternoon my mom and my sister Kristin came with me to my follow-up appointment. Fortunately my infection had cleared up and the white spot on my cornea had gone away. I picked out some new frames with the help of my mom and my sister, and I can't wait to get them next week. It will be great to be able to see clearly, even when I'm not wearing my contacts.

Sometimes I wonder what it would've been like to live in the "olden days" before there were things like glasses and contacts. I bet people just thought that they were slowly going blind. I have really poor vision, and I can't imagine having to live life not seeing!

I can't wait for the day when I have a resurrected body. One of the many reasons is to have perfected eyes so that I can see in perfect 20/20!

Invisibility cloak no more!

In the first year after my accident I had a conversation with my sister Sharon and I remember telling her that I wished I had an invisibility cloak like Harry wore in the Harry Potter books. (He was able to wear this cloak and move about without being seen.) I wished I had one so that I could go out in public without being seen and without having people look at me. I wanted to go out in public, but it wasn't worth the trouble of feeling like I stuck out like a person that was so obviously different from everyone else.

I'm happy to say that now after almost seven years since my accident, I've conquered this fear, and I now not only feel okay in public, but I actually want to go out and do things. I never thought I would change my mind about this, but I have, and I feel so happy. I attribute this change to making new friends. Having friends makes me feel "normal" in a lot of ways again, and I'm so thankful for that!

When you meet me

I like meeting new people, but I always wonder what people think of me when they see that I'm in a wheelchair. I wonder if they think that I've always been disabled, or if I have some kind of disease or if I were in an accident, etc. A lot of times when new people meet me, they extend their arm in attempts to shake hands. This always makes for an uncomfortable few moments while I either wait for the person to put their arm down or I tell them I can't shake. (I think it's probably more uncomfortable for the other person than it is for myself, but either way it's an awkward situation.)

I think my situation makes me appear pretty intimidating to others because most strangers don't approach me on their own. They usually wait for me to introduce myself first (which I rarely do because I'm shy) or they wait for someone else that already knows me to do the introducing. I prefer to have people come to me since I can't go to them, but sometimes I have to improvise. Just for the record, I am approachable, even if my wheelchair makes me appear intimidating. I think most handicapped people feel the same way, so don't be afraid to strike up a conversation with someone who's disabled!

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!

My humble abode

After my accident the living room in my house was converted to be my bedroom since I could no longer go up and down the stairs in my house. Although the living room is smaller than my former bedroom, I'm grateful for it and I'm grateful it was relatively easy to convert. Here are a few pictures of my bedroom:

A view looking towards my bed:

A view looking the opposite direction:
My bookcase (I really need a bigger bookcase because I've acquired more books than this bookcase can hold):
My entertainment area:
The shelving unit where I keep a lot of my scrapbooks, photo albums and other projects (I like everything well organized): Some of my nick-knacks (I like pretty things): My garden of African Violets (I love plants, especially ones that flower): My overhead lift (this is how I get in and out of bed/my recliner/wheelchair):

Of course it's kind of hard to understand what my room looks like and what the layout is like from just a few pictures, but hopefully you can get a sense of where I live and what my living area is like.

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!