Category: Spina Bifida

The Eye of the Tiger

Do you ever feel as if you have no fight left within you? Living life in a disabled body, especially when that body breaks down is overwhelming. I have been luckier than most in my life. My independence has not been as limited as others who are disabled. However, the past few weeks has left me feeling like I am down for the count.

Battling a bone infection is tough work. I’ve actually done it a few times in my life. It saps your energy. Being treated with heavy doses of antibiotics is not pleasant, as these drugs often kill the normal bacteria that grows within your gastrointestinal system. This often leads to unpleasant side effects for your bowels. Fortunately, there are probiotics that can reverse these side effects.

Struggling with physical ailments typically increases the anxiety, which often bombards my mind. Usually, my first reaction is to get frustrated, which leads to anger. I often question God why He allows suffering of any kind. I think sometimes it is a way of getting our attention when we are stubborn. This is especially true in my case. I am a very stubborn person, who often refuses to listen to others.

My stubborness led me to avoid treatment for a wound on my foot, which then became infected. This infection then entered my blood and bone, which if it had not been caught in time, could have killed me. This realization has been frightening. According to my doctor, I am still not out of the woods. I will be on IV antibiotics for the next 4 to 6 weeks.

Some days are better than others. Frankly, I feel like a boxer who has been knocked down one too many times. How much more do I have left to give? This is a question I have pondered lately. My body is tired. My mind is exhausted. My nerves are frayed. However, I am not ready to quit.

I came across a story tonight about a little girl who is in the hospital fighting for her life. She has multiple IV tubes running into her neck, which are delivering heavy doses of antibiotics to her body. I pray that this little girl has a lot of fight left within her. What I am battling is minor compared to what she is facing.

One of my favorite movies is Rocky IV. It is essentially a David vs. Goliath story, where a much smaller, slower fighter is tasked with defeating a giant, genetically engineered monster. Just before the final fight sequence begins this behemoth leans down into Rocky’s face and says, “I must break you.” I feel as if that is what this infection has said to me.

However, much like Rocky, I have the will to win. I am bruised and bloodied, but no one is going to throw in the towel. I have plenty of people in my corner, many of whom I know are praying for me. This giant will be defeated. Can you hear the opening chords to “Eye of the Tiger” yet?

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The Trash Bag Ladybug Monster

God usually teaches me humility in humorus ways. My latest lesson has involved showering. If you have been keeping up with my blog, you’ll know that I am currently undergoing treatment at home for a bone infection that I got through a wound in my foot.

I currently have an intravenous line in my right arm, through which Amanda administers antibiotics every morning. I also have a bandage on my foot that Amanda changes every other day. I am lucky to have such a loving wife that is willing to do this for me. However, she does like to have fun with me as well.

For instance, in order to shower I need to duct tape garbage bags around my right arm and left foot. This is to keep my foot dressing dry, as well as my IV line. The duct tape that Amanda chose for me has ladybugs on it, which look great with the black garbage bags. Once I am all suited up I look like the “Ladybug Trash Bag Monster.” I then “climb” into our shower, which is the size of a small phone booth. It is fortunate that my shower chair even fits in there.

Getting out of the shower takes a leap of faith, as I am never quite sure how I am going to stick the landing. This morning I gave myself a 9.0, as I did not fall. I also maintained pretty good form through the dismount from the shower chair.

After I am out of the shower comes the fun part, the removal of the bags. This involves ripping strips of hair off of my legs, and some hair from my right armpit. I am beginning to think I should just wax myself down. That way the agony of the tape removal would be lessened. In addition, I’d probably become more aerodynamic as I race through the house in my wheelchair.

Yes, I choose to laugh at these times. If I didn’t life would be a daily struggle. However, I know that God is there. Likewise, I know He sees my struggles. He uses these to keep me humble. I am often frustrated, but I take comfort in knowing God has never taken His hand off of my life. My duck tape with the ladybugs and those black trash bags are reminders that God has a sense of humor. He continues to care for me even when I fail Him.

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Our Wedding Day

Today, Amanda and I will have been married 8 years. I can seriously say she is still the one for me. She is the love of my life. We still enjoy being together and we love to laugh. Our wedding day was a little bit of a different story. If you have been following me here, especially over the last couple of weeks, you know I am prone to cuts, and scrapes, and skin break downs. These are all common for those with spina bifida, due to decreased sensation in various parts of the body.

In May 2012, I finished my master’s degree in school counseling. Then in late July of that year I accepted my first position as a guidance counselor. This was at a small, public high school about 40 minutes from my hometown of Sterling, Illinois. Briefly, after I took the job I began to move things in to my new office and then began to pick up the pieces the previous counselor had left behind.

For one, nearly none of the nearly 300 students had a set schedule of courses they’d be taking, despite the fact that school was a month from starting. This meant that I was given a crash course on how to use the computer program that the district used in scheduling its students into classes. This hasty “tutorial” was given by a counselor that had been there for nearly 20 years, but had retired a few years previously. She was a good teacher and she helped me and the guidance secretary to learn things quickly.

Previous to taking this job, I had divulged to the principal that I’d be getting married in a few weeks, and would be gone on my honeymoon up until all teachers and support staff were due back for in-service days. However, I told him I’d get as much scheduling done before leaving for my wedding.

This gave me about two weeks, including weekends to get student course schedules completed. Luckily, I did have the help of the retired counselor and the counseling office secretary. Despite this, the night before I was supposed to be in St. Louis, where the wedding was being held, we were only about 75% through the entire process. Therefore, I had to leave the rest of the scheduling in the hands of my colleagues.

I went home late that night feeling defeated, but not entirely worried. However, I did feel a bit feverish. This I just chalked up to being overworked, as I had put in some very long days that week. It never even dawned on me that it could be something else.

The next morning I rode down to St. Louis with one of my groomsmen. On the way I began to feel less and less like myself. Then it dawned on me, I had an infection in my knee. I had cut my knee earlier in the week. I don’t even remember how it happened now. I just knew that once we hit Peoria, Illinois that I needed to find an emergency room (ER). We stopped at a ready care facility at first, but once I explained what was going on the doctor there suggested I go to the hospital that was just down the street.

Arriving in the ER there, they assessed the situation, realized there was infection in my knee. They suggested cutting my knee open with a scalpel and draining all of the pus. Then they were going to admit me. I told them to go ahead and cut the knee open and clean it out, but that I would not be staying, as my wedding was the next day. So, they got my knee “fixed.” This means they sliced it open, drained it, left it open, bandaged it and sent me on my way with antibiotics and painkillers.

We did make it to St. Louis, but I missed my bachelor party. Which by that point was just as well, since my knee was throbbing. I got to my hotel, which was within walking distance of the church in which Amanda and I were to be married. I was finally able to crash, and that I did. As I recall, I spent much of that day in bed to try and conserve as much strength as necessary for the wedding rehearsal that night.

For the rehearsal, I remember walking the few blocks to the church, as I was curious to see how my knee was going to fair the next day. I was also on Vicodin, a painkiller that makes me both anxious and drowsy. It is a wonder I did just lay down under a tree and go to sleep. However, I did make it to the church. Throughout the rehearsal I felt a little confused, and my legs were a bit rubbery. However, I soldiered on and the rehearsal ended. From this point forward things are a bit hazy.

I know I somehow made it to the church next day a few hours before the wedding to get dressed and go over last minute plans. I remember feeling both excited and very anxious about the day. I was not having second thoughts at all. It was mostly just stage fright. Likewise, I was concerned about how well my knee was going to hold up. However, before I knew it the wedding had begun. In just a few short minutes I would be going out on stage and trying my hardest not to pass out in front of a few hundred people.

I do remember how beautiful Amanda looked as her dad walked her down the aisle to me. Without her smiling at me the entire time, I am not sure I would have been able to withstand the agony I was in for that period I was up on stage. It was a beautiful ceremony held in a perfect sanctuary. Sadly, I remember very little of it. To this day that bothers me. I wish my mind would have been more present. It is a day every couple should be able to remember together.

There are so many other memories Amanda and I have made since then. It is reassuring to know that there is someone who loves me unconditionally. We are really two peas in a pod. I love Amanda dearly and I am thankful she is my wife. She is a strong woman that is not afraid to get down in the trenches with me. She has cared for me when I have been ill, and continues to do so. I feel fortunate to be married to someone who is so giving and so patient. Here’s to 40 or 50 more years of making memories. There is no one else I’d rather being doing it with.

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PICC Your Poison

Coming home from the hospital always does a body good. I slept last night better than I have in weeks. That is despite the Peripherally Inserted Central Catheter or PICC sticking out of my arm. This is the line through which I’ll receive a daily dose of antibiotics through September 21, that is if things go to plan.

This is not the first time I have had a PICC, however, I am hoping it is my last. It is fascinating to watch a PICC line being inserted. An ultrasound machine is used to find an appropriate vein. Then through the use of ultrasound imaging the catheter is guided up through the vein until it reaches a point just above the heart.

The next several weeks will be filled with follow-up appointments with doctors. I’m also going to attempt to return to work here at home. It is going to be an uphill battle, but I have a great partner with whom to fight. Without my wife Amanda I would not be able to get through my days.

I am hoping my body responds to treatment as it should. The sooner all of this is in the rearview mirror, the better. I’ll be praying for strength and endurance for both Amanda and I. Likewise, I’ll be praying for healing. My body is weak, and my mind is weary. However, I know this too shall pass.

I am thankful to have such a wonderful family and group of friends who are willing to help wherever it is needed. I’d appreciate your prayers through this trying time.

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He Said, She Said!

It appears I will be going home today, I think. Modern, American medicine is something that I am still struggling to understand. I have had a doctor called a “hospitalist.” To my knowledge, this doctor is supposed to coordinate the treatment being carried out by a team of doctors. In my case, I have an infectious disease doctor and a podiatrist. To me the lines of communication between all three doctors should be open and collaborative. However, my observations have shown me otherwise.

The entire time I have been hospitalized, podiatry has just walked in whenever they feel like it and does what it needs to do. Infectious disease has been the same way. The hospitalist, on the other hand, doesn’t really seem to know what is happening with either department. I seem to be the middle man between them all. This is apparent when each asks me what the other has said. Isn’t this what a hospitalist is being paid to do? If so, I’d like my first paycheck by next Friday.

This is frustrating when all you want to do is go home. For instance, the hospitalist was in today and said he needed to check on whether antibiotics would be administed at home or if I would need to come in to the hospital each day to have this done. This is infuriating, seeing as how the hospital social worker told me yesterday that home nursing would be by tomorrow to administer my first home dose and then teach Amanda and I how to run it from there.

This all leads me to believe the hospitalist has read none of the notes in my chart, as there is an order in for me to be discharged. Plus, I am positive there is information about the establishment of home nursing care. Fortunately, I have a feisty nurse today that knows what she is doing and has read the notes in my chart. I still can’t figure out why a doctor who is supposed to be coordinating my care has not. Maybe, he just has chosen not to take the time.

I expect a standard of care when I am being treated for an illness. My nursing staff has been exceptional. The doctors on the other hand all have seemed to have checked out on me, which doesn’t instill a lot of confidence. I wish I could say this is my only experience like this, but it isn’t. If a generalist is going to be on staff then they need to have a firmer grasp on the information being provided to the patient. The patient should never have to play a game of “he said, she said” with the doctors. To me that is unacceptable.

It is nearly 1:00 p.m. and I am still waiting to go home, despite the fact that my daily dose of antibiotics have been administered. I’m not ordering any lunch, as I refuse to eat another meal here. I understand the discharge process can take a while. I am trying to be patient. However, as I have noted in past blog posts I am not the most patient of patients. However, am I really the patient anymore when I am being asked to provide the services of a “go-between” with my doctors?

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Please Shut the Door Behind You

I wish someone could explain to me what sense it makes to wake someone up who is in the hospital every three hours to take their vitals. If someone is critically ill, yes, I can see keeping a close watch on their blood pressure, temperature, and pulse rate. However, for a patient who is stable, and has been since their admission then why the need? Rest to me seems as if it should take precedent over anything else.

If a body needs healing, rest seems to be one of the best ways to promote that. I get horrible sleep in the hospital. It is more like a series of cat naps I take at night. This is because I know that if I try to fall asleep for real, I’ll have someone in asking to check my blood pressure, my temperature, and my pulse rate. This is despite the fact all of those numbers have been consistent for days!

I’m a quiet person who generally doesn’t summon the nurse or an aide for anything, unless I need to use the bathroom. Then I ask for help getting to and from there. Once that is done I expect to climb back into bed and be left to my own devices. If I have my phone and iPad within reach that is all I need. I like my door to be shut and to not be bothered.

This seems to unnerve some nurses and aides. I am a low-maintenance patient who loves to be in the quiet of my own space. That is not to say I don’t appreciate their kindness and their helpfulness, but in all honesty, I’d rather just enjoy the solitude. Maybe in hopitals there needs to be a side of the floor for those who need the extra care and support, and a side for those who just want peace and quiet.

In reality, I am pretty certain none of this will ever change. however, if I am in a hospital to rest then let me do it. I know my body and it enjoys its rest. Let me sleep and I will be gone much quicker out of your care. Yes, I know I sound like an old man who is growling through clenched teeth for medical staff to “get off my lawn!” Nonetheless, I do appreciate what they do. They just need to do it more in someone else’s room. I am fine, I will be fine, and I know when I need to call for help.

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What is There to Fear?

If you read my last blog post you know I have been struggling physically the last few days. I thought things were looking up until I went for a follow up with primary care doctor today. The infection in my foot appeared to be getting better. However, upon closer examination the wound on my foot had a sneaky, little hole that was leading down to my bone. Through this hole poured some of the infection. What this means is yet another surgery tomorrow.

As I have gotten older I have begun to question just how much more my body can withstand. I’ve had over 30 procedures done in the 43 years I have been alive. It seems there isn’t a part of my body that has been left unscathed by a surgeon’s scalpel. I have seen large chunks of flesh removed from my body, my head has been shaved bald, and I’ve had muscles removed from one part of my body and transferred to another spot.

I’ve had some great doctors. I have also had some fairly incompetent ones. The nurses, on the other hand, have all been terrific. They are the ones who really know what is happening. I’ll ask a nurse something before I ask any doctor. A nurse, even if they don’t know the answer, can usually do some investigative work and get you the information you need. Plus, they clean up all of the messes!

I don’t mind having surgery. It is nothing that scares me. I’m confident in the doctor who is performing the surgery, so I know I am in capable hands. There are great nurses around as well. Likewise, I know prayers are already being spoken for me. Therefore, it is in God’s hands. What is there to fear? I just hope they ask me what kind of music I want to listen to as I drift off to sleep!

P.S. I had my first test for COVID-19 today. It felt like someone shot onion juice up into my sinuses, as my nostrils begin to sting and my eyes began to water! After that I feel like I can face anything.

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Saturday Night Fever

One of the most difficult things about having spina bifida, at least for me, is the lack of sensation that I have below my knees. Along with this lack of sensation is also decreased circulation. Having no feeling in your feet can’t present various problems. The decreased citculation can magnify those problems.

For instance, I have to wear leg braces to keep my feet from flopping around aimlessly. Likewise, I can easily cut my foot and not even feel it. I’ve actually had a chronic wound on my foot for several years now. Unfortunately, this past weekend, my wound got infected. This is despite always keeping it clean and dressed with a bandage and antibacterial ointment.

Friday afternoon I began to feel a bit feverish. Likewise, chills also began to rack my body. At first, I thought this was perhaps just some dehydration, as I had drank a lot of coffee and very little water throughout the day. I woke up Saturday morning feeling a little better. However, that was not too last.

I thought as the fever and chills continued throughout the day on Saturday that I might have contracted a UTI. This can be a fairly common issue for those with spinal cord injuries as well. Therefore, I started drinking lots of water and cranberry juice. I then went to bed and slept all afternoon and night.

On Sunday morning when I woke up I was feeling a little better again. However, I think the Tylenol that I had taken the night before was merely masking my symptoms. As I looked at my foot as I do every morning. It looked angry. It was very red, streaky, and warm. I now knew the real cause of my agony. The wound on my foot was infected.

It looked fine on Saturday morning, but I now knew I needed to get the emergency room. Amanda dropped me off there around 9:30 yesterday morning. They drew blood, swabbed the wound for cultures, and ran two different IV antibiotics. I was then sent home six hours later with a prescription for two different oral antibiotics, which I am happy to say, seem to be working well. Today, I feel like my body has gone a few rounds with Mike Tyson in his prime.

My foot does look a lot less angry. I haven’t had any chills since last evening. In addition, I don’t have a fever at the moment. I am not sure I am out of the woods there yet, as it seems like once the Tylenol wears off the fever slowly creeps back up above normal.

I am sure I am in for a weekly visit with a wound care specialist now until my wound heals. At 43, despite having been a patient all of my life, I still don’t have the patience to be a patient. I think I might have prayed for patience one too many times. The only problem is, I still have not learned that skill. Perhaps, this will be the turning point. It is comforting to know that we live two doors down from the hospital. Especially, since I am there about every 6 months!

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Progress?

Today marks the 30th anniversary of the passage of The Americans with Disabilities Act (ADA). This legislation gave equal rights to those with disabilities with respect to employment, transportation, public accommodations, government services, and telecommunications. I was 13 years old when the ADA became law. At that time I was too young to understand the importance of its passage.

I’m not a political activist. In fact, I shy away from politics as much as I can. Especially, today when there is so much that divides us as a nation. Likewise, I have always been a person that has adapted to my environment quite well. Therefore, when I was younger I did not feel impacted too much by having limited access to places and things.

I guess you could say I was used to living in a world that wasn’t made for a person like me. Moreover, for many years I felt I was too “normal” to fit within the disabled world, while being just disabled enough that I could never be totally accepted as “normal.”

As I have gotten older my mobility has decreased somewhat. With this I have come to realize just how important the ADA is for people with disabilities. Looking back it seems odd that a law like this was even necessary. Furthermore, the fact that it was passed just 30 years ago today is baffling. There are still far too many places that are inaccesible to those with disabilities. Likewise, according to recent data compiled by the U.S. Bureau of Labor Statistics, those with disabilities are still much less likely to be employed than those who are not disabled.

Working in social services I speak with many who are too disabled to work. Access to services for these individuals is often quite limited. I believe that those with disabilities are still often marginalized. Are those who are able-bodied fearful of those who are different? I believe many are, but I think there is more to the story as well.

People with disabilities need to advocate for themselves. For too long many of us have been silent. I include myself in this group. Relying on “big government” to cure what ails society is not the answer. We live in a time when a majority of politicians are more worried about mudslinging than they are in representing those who elected them. Yes, you can make your voice heard at the ballot box. However, you can also make your voice heard through social media, getting involved with an advocacy group, or work to educate those around you about the daily struggles those with disabilities face.

Living with a disability often means you feel as if you don’t belong. The world was made for those who can walk and talk without any difficulties. Barriers exist in everyday life that don’t exist for those who are “normal.” I wonder where we will be 30 years ago from now?

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Scars

Scars are ugly, at least that is what many people think. I would disagree. After having undergone dozens of surgeries, I have scars. I have them from the top of my head all the way down to my feet. While they are not things of beauty, they are reminders of healing. What once was torn is now mended.

At one time I hated the scars that line my body. However, the older I get the more they remind me of the battles I have fought. These are battles I have won. I know this because I am here to tell about them. Having surgery no longer frightens me as it did when I was a child. I must admit I kind of enjoy the feeling of anesthesia. It makes you feel like you are leaving your body just as you lose consciousness. Surgeries to me are just another opportunity to find victory.

This victory comes from knowing that my body will heal, as it has dozens of times. I know there will come a day when my body will give up the fight. The wounds will no longer physically heal. Despite this I will still have victory.

I have faith that I will be given a new body once I depart my earthly one. This new body will be free of scars. There will be no more pain or sorrow to endure. No more battles will need to be fought. I will be healed for an eternity.

So you see, scars are not ugly, they are what is left after healing has come. Likewise, they can be badges of honor if you choose to see them as such. If you are in a place where you are feeling defeated, look at your scars. You may have physical ones, or they may be mental scars. Let them remind you of the healing that has taken place. You’ll live to fight another day.

One of my favorite songs is by a band called Rush. The song is titled “One Little Victory.” To me this song perfectly captures what it feels like to struggle against the forces we often face. It is a song that helps to motivate me when I feel I am losing the battle. It helps to remind me that I have scars but that those are merely emblems of victory.

“One Little Victory”

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