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.
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.
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.
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!
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?
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.
If you have followed this blog for a while you know that I ride a hand-powered trike. It is something that I enjoy quite a bit. However, I’ve not been out for a while, as I have had some back pain. The problems with my back have greatly limited my mobility over the past few months.
Fortunately, I am beginning to regain my strength. Today, I went for my first ride since last August, or so the app that I use to track my rides tells me. It is difficult to imagine that it was the end of August last year when I stopped riding. I struggled today to get back into a rhythm. However, muscle memory is a great thing. It was not long before I was gaining back some of my momentum.
It was a short ride today. I did just under 4 miles. Last summer my average ride was about 10-12 miles. It will be a while until I am back up to those distances. I think for now I’ll just focus on building up my endurance. These last few months have not been kind to my body. I’ve not focused on my health in quite some time. Working from home and leading a largely sedentary lifestyle is what led to my back problems, I believe.
I hope today was the start of turning things around and becoming more active. I know my mental health could use a boost. Plus, it is fun to watch all the people stop and just watch as I go by, like I am some being that has landed here from another planet. I am just a guy who pedals his bike with his hands. If you see me out, give me a honk. Although, I may not hear you, as I usually am wearing my headphones. After all, I do have to be on standby in case the Mothership calls me back to our landing site.
Last April I wrote a post listing the “Top Ten Things I’d Like to do Before I Die.” This list included places I’d like to visit, events that I would like to attend, and so forth. Today I am going to turn things around and do an “anti-bucket list” or things I hope I never have to do again before I die.
There are certain foods that I despise. Near the top of this list are lima beans. To me they taste like soap. Plus, their texture is unpleasant. Therefore, I will never have another lima bean as long as I live!
Over the course of my life I have undergone at least 30 different surgical procedures. Being put under for surgery is not an unpleasant experience. I do enjoy the feeling of euphoria that comes over you just before “the lights go out.” However, as I have gotten older it has taken me longer to bounce back after surgery. It is because of this that I hope to never have another surgery.
One thing that does not fill me with euphoria is riding a rollercoaster. I actually am terrified of going on most amusement park rides. I prefer to have my feet planted on terra firma. I would be happy never to ride another roller coaster as long as I live.
In keeping with the amusement park theme, I hope to never go to Disney World ever again. I went for the first time at the age of 30. Perhaps, it is a different experience if you go when you are a child. It may seem more magical then. However, I didn’t find anything appealing at all to being at Disney World.
Me on the “Small World” ride at Disney World. I think my face says it all.
A few years ago I went on a canoe trip on the Meramec River in Missouri. I have written about this experience in a previous post. It was quite possibly the last trip of this kind that I will take. If you do go back and read both parts of this story, you’ll see why. I not only lost my crutches and glasses, but I lost some of my dignity as well.
One thing that I have experienced a couple of different times is food poisoning. I can safely say I hope this never happens again. There is nothing pleasant about eating something that makes you ill. I can no longer eat at couple of different restaurants due to very bad experiences.
Nearly three years ago Amanda and I had an issue with the plumbing in our house. I will admit it was caused by me. I had gotten into the habit of flushing little bits of clumping cat litter down the toilet as I cleaned out the litter box for our cats. Needless to say this was not a wise idea. Fortunately, I have a cousin or two in the plumbing business, as our sewer line backed up into our house. I learned my lesson and I hope to never have to live through this experience again.
As noted above, I have had numerous surgeries in my life. Many of these have been orthopedic in nature. I spent the first few years of my life in and out of body casts. There is nothing worse than being confined inside a hunk of plaster, especially when you are hot and tired. This is an experience I would prefer to never have again.
Me propped up against a chair in one of the many body casts I was in as a child. My brother Cory is looking on in amusement as I see just how wide I can open my mouth.
We are fortunate here in America to have public restrooms in almost every store and restaurant. If you’ve ever traveled abroad you’ll soon find out that in other parts of the world public toilets are not so common. I learned this the hard way one night in London as I really was in dire need. While I do love to travel, I hope to never again have the trouble I did that night.
Finally, I have spent the last two months working from home. In that time I have begun having conversations with myself while Amanda is at work. I am ready for restaurants, movie theaters, and other public places to once again be open. Never again do I want to experience a global pandemic. In the words of the late, great Jerry Stiller, who played Frank Costanza on Seinfeld, “Serenity Now!”
Some of the conversations I have with others can be amusing. I suppose I should find them offensive. However, I am a very politically incorrect person myself. That should be apparent to those who follow this blog. After all what disabled person would refer to themselves as “crippled?”
Just a couple of weeks ago I was at the gas station filling up before heading out on a road trip. One of the attendants approached me and said, “Hey, I have been on those things before.” Having had many such conversations in the past, I instantly knew he was referring to my crutches. This gentleman proceeded to recount his experiences of walking with “those things” after turning his hip bone into “powder” as a result of an automobile accident he had been in as a young man.
This man was kind and polite, however, I wonder if he realized that my crutches are more than just “things” to me. They are essentially an extension of my being. They serve as my legs. Likewise, they often operate as hands. I use them to grab things that are often out of reach of my normal wingspan.
I did not find this man’s comments hurtful or disrespectful, as he was just trying to make conversation. However, his experiences with “those things” are far diffent from my own. My use of them is not temporary. I have walked with crutches for over 30 years. God willing, I will walk with them for at least 30 more. They will never just be “things” to me. Are your legs just “things” to you?
I appreciate people who do things with excellence. Perhaps this is something I come by naturally. My father was a perfectionist who was a skilled craftsman. He was not only a talented carpenter, he was also a welder. His work was done with precision and skill. These traits are ones I have always admired in others.
For instance, I grew up idolizing Michael Jordan. He was the greatest basketball player ever to play the game. His skills on the court were legendary. However, they were developed over years of dedication and practice.
Another person I grew up admiring was Neil Peart. Neil was the drummer of Rush, a Canadian rock band known for crafting pieces of music that were very intricate and complex. Neil passed away early last month, but he left behind a body of work that will stand the test of time. Besides being one of the best drummers that has ever picked up a pair of sticks, he was also a brilliant lyricist, as well as a very gifted author. His books are some of my favorite biographical works of literature that I have ever read.
Music is something that I have often looked to for inspiration, escape, and solace. I think listening to others express themselves through music gave me hope. I was not the only person who felt alone or angst-ridden.
Growing up I often felt alienated from my peers. I was different. My body did not look the same. Likewise, I wasn’t always able to do the things others my own age could do. Therefore, I often retreated inward. I was not a talented person. I was not able to build anything, play basketball, or write a song. However, I did appreciate the people who could do these things.
I still feel like I am not particularly good at anything. I am okay at doing a few things. However, I don’t have any skills that stand out as exceptional. The older I have gotten the more accepting of this I have become.
I’ll never be a craftsman, and I will never defy gravity on a basketball court. I will also never write any great pieces of music. However, that is okay. I am learning to appreciate who God created me to be. I still have work to do. Hopefully, 2020 will be the year I reach some of the goals I have set for myself. I keep hoping there is a novel somewhere inside of me just waiting to be written.
Put the Crippled Kid up Front... 