Chew and Swallow ... and say "Cheese"

It’s kind of like a coffin. Or what I would imagine a coffin would feel like. I know, weird as it may sound, I don’t try and spend too much of my free time laying around in coffins. But the MRI machine is close to what I would imagine one would feel like. The sides and front of the machine are insanely close to your body and I can understand why it freaks claustrophobic people out. I had had an MRI once before, a few years ago, so I knew what to expect. This time, unlike my previous experience, I was offered the chance to listen to some music while the MRI examination took place. They gave me a pair of headphones and offered me a choice of music to help drown out the noise of the machine. The nurse asked me what kind of music I liked and what I wanted to listen to during the procedure. I wasn’t sure and asked what kind of music was available. She said, “We have Blues, Jazz, Hip-Hop, Classical, Alternative…” I wasn’t sure what I felt like listening to so I went with what I assumed was a safe bet and said Alternative. At the last moment as I was being fed into the tube, I had a fear that it would be cheesy, mainstream alternative music like Creed or Fallout Boy or Linkin Park. And sure enough, it was. I was on my back and looking up at the rounded roof of the machine six inches from my face as the sweet dulcet tunes of Blink-182 began. “Aw (bleep)” I said under my breath. It wasn’t too soon after the music started that the cacophony of the MRI began. CHUNGA CHUNGA CHUNGA CHUNGA - tweep tweep tweep tweep - CHUNGA CHUNGA CHUNGA CHUNGA. After awhile I began focusing on the bangs and blips of the MRI to drown out the music being fed to me by the headphones. It was a mighty battle as to what least offensive noise would win out. In the end, I gave up and just took a nap.

With the MRI done and waiting to have my follow up with Dr. Mackay, I went back to my speech language pathologist for my Barium Swallow. I went into my speech pathologist’s (Patty‘s) office and was introduced to a whole new team of doctors and radiologists. Then I was escorted to a new section of the hospital and presented with a tray of soft foods. Bread, pudding, applesauce, etc. They placed an X-ray machine next to my head, covered my nether regions with a lead blanket, and then asked me to begin eating. The barium liquid that my food was dipped in or mixed into was pretty bland and kind of had a vanilla flavor. I almost didn’t even notice it except the fact that all the food had a weird milky white hue. While I was being given directions from the doctors who were standing behind a protective wall, I first began to notice something different about my swallowing. It had suddenly become easier to swallow and it felt better than it had in weeks and weeks. I thought to myself “This is great. I have a chance to show these people what is wrong with me and my throat decides to start functioning properly.” After working my way through the applesauce and pudding, I was asked to describe my problems I was having so that they could try and look for any complications. I guess they weren’t seeing any on their x-ray machine. I tried my best to describe my difficulties. How it felt like my throat would close and not allow any food to go down it. Or how the food would try to go back up my nose whenever I swallowed. Or how I had developed a little hiccup every time I swallowed a bite that was too big. They hadn’t seen anything yet of concern so they decided to have me swallow food that was bigger and might pose more trouble while swallowing. So I moved onto the bread. And thankfully this seemed to work as I immediately developed my problems again. “Whew,“ I thought, “You see? I’m not crazy.“ My hiccup was back and as I swallowed I had to stop and bring the food back up before swallowing again. I was actually thankful that the problems returned. After the bread, they were happy with the results obtained and came out from their protective lair to show me the video of me swallowing on a little monitor in the room. It was pretty cool to see an x-rayed image of my head as I chewed a bunch of food that illuminated on the screen. I saw my muscles working and the food moving around to the back of my throat and my little hiccups helping the food go down. Unfortunately, they weren’t able to really diagnose a problem but said they had a good baseline to refer back to if my problem got any worse. And that was all. They said thank you, have a good day, and I left.

I met with Dr. Mackay later that week to review my MRI. The images are pretty amazing as you get to see your brains and all that stuff right there in front of you. I was thankful that there were brains to see and they were pretty big if I do say so myself. New nickname - "Big Brains" Knudson. Dr. Mackay said that the images did not clearly show any signs of MS, multiple sclerosis, but that there were some blurry areas of concern. He didn’t like the quality of the images and asked me to get another MRI done so that he could say with more certainty that it wasn’t MS. Luckily for me, the lab downstairs had an opening that afternoon and I was able to get an MRI that same day. I walked into the MRI examination room with the confidence of a man having done this before. It was almost becoming commonplace. I laid down on my back and prepared myself for the coffin. I was handed the headphones and without even being asked I said “Classical, please.”

Other Symptoms

During the time I started having urination difficulties, I also began developing other weird nonsensical symptoms. I first noticed my problem swallowing when I was playing a game of outdoor soccer and went to get a drink of water at halftime. I took a big gulp of water from my water bottle and for some weird reason when the water moved to the back of my throat it didn’t go where it was supposed to go. Half the water went down my throat with a painful swallow, but half the water went upwards at the back of my throat and out my nose. I stood there on the sidelines with water pouring out of my nostrils. It was like I was using one of those neti-pots thingies that you use to clean out your nasal passages. I had a stream of water shooting out of my nose. I wiped away the drippings from my nose and tried again. Same result. The water wanted to go up my nose instead of down my throat. Uh oh. What does THIS mean? Over the next few days I began to notice how difficult it had become to simply eat meals. I would take a bite of food and move it to the back of my throat and I swear, this is the only way to describe it, it felt as if my body “forgot” how to swallow. My body froze and my throat muscles ceased to work. I would move the food to the back of my throat and it went halfway down and then stopped - no further. I would bring the food back up, chew it again, take a smaller portion, and then move it back and try it again. Sometimes it went down, sometimes it didn’t. On more than one occasion I had to spit out my bites into a napkin because there was no way it was going down at that point in time. I eventually worked out a system of taking smaller bites, chewing thoroughly, and swallowing every bite of food with a drink of water. The water helped the food go down but I was always fighting to keep this new water-food slurry from going up my nose. I had asked my Urologist if he knew of anything that could be causing this behavior. He was bluntly honest and told me that was not the part of the body he dealt with, but that it sounded to be something caused by a neurological disorder. And since I had no structural or physical damage that was causing my urination difficulty, he said that was probably neurological, as well. So he referred me to my first Neurologist, Dr. Mackay.

I met with Dr. Mackay and described all my symptoms to him. The urination difficulty, the swallowing difficulty, and another problem that had recently surfaced - my itching. I first noticed the itching when I woke myself up one night scratching the back of my legs uncontrollably. I couldn’t believe how bad my legs itched. I scratched and scratched and scratched but I never felt relief. There was no rash or hives or anything of that sort - there was just an intense need to scratch an itch. This symptom wasn’t necessarily a painful one, but it was very irritating. And it would migrate as well. It started off on the back of my legs and would persist for two to three weeks before it moved to my upper back. Then after another couple of weeks it would move to my upper thigh and so on. The worst was when it spread to my face. I looked like I had a nervous tic or something as I was constantly scratching my face and squishing my nose and eyes to seek temporary relief. Even my eyeglasses as they rested on the bridge of my nose caused me to tear up from the sensitivity that now surrounded my face. Dr. Mackay heard about all of these symptoms and pretty much summed it all up when he said “humph, that’s bizarre.“ He’s a straight shooter that Dr. Mackay. I underwent all of his neurological tests, a lot of which had to do with my balance and muscle strength. They were actually kind of fun as I stood on one leg and touched my nose and walked back and forth with my eyes closed. I’m a pretty good walker so I passed those tests with ease. Once he finished his exam, he entered some notes in his computer and then ordered me to have an MRI of my head and spine. He told me his first thoughts were that I might have MS, Multiple Sclerosis. Difficulty urinating, trouble swallowing, and itching can all be signs of MS so he set me up for a time to have the MRI and made another appointment to see him in a couple weeks to discuss the results. But in the meantime, he wanted me to see someone concerning my difficulty swallowing. During my examination, Dr. Mackay had noted that my soft palate at the back of my throat wasn’t moving correctly when I opened my mouth and said “aahhh”. He referred me to see a speech language pathologist/speech therapist for an initial consult and swallow evaluation.

I met Patty, my speech language pathologist, the following week and conducted my initial examination in her office. She began by asking me to describe my swallowing difficulties and took down notes in her notebook as I spoke. After talking in great detail for about a half an hour, she left her office and returned with a tray of food from the hospital cafeteria. The tray had a slice of bread, some peas and carrots, a bowl of soup, some sort of chicken cacciatore, and a glass of juice to wash it all down. She asked me to go ahead and dig in while she sat back and watched. I must admit, it was a bit odd. I felt like I was in some strange fetish film and ate my food in silence as she just sat there watching, writing notes, and occasionally asking me questions or giving me directions. “Try swallowing this way” she would suggest, “Now turn your head to the left before you swallow to see if that might help.” It actually did help. After I had a good amount of the hospital food, Patty told me it was plain to see that I was having difficulty swallowing and she would like to administer another test known as a Barium Swallow. Once again, I will not bore you with all the specific details so feel free to google “Barium Swallow“ if you‘d like. But basically it is a test in which I eat bits of food soaked in a chemical liquid known as barium that shows up on an x-ray machine. Images of my swallowing are recorded by an x-ray video machine and the barium helps to illuminate the food and shows its flow as it moves down my esophagus. By using x-rays, the specialists can get a better idea as to where any problems might be occurring along my upper digestive tract. Of course I wasn’t able to do the X-ray test during this appointment. No. Of course not. Instead, I had to set up another time to come in and perform the barium swallow. Now, on a side note, it seems to me that doctors enjoy setting up appointments. Why else would it be that every time I go and see a doctor, it appears that I leave with another appointment or two set up for some future date? Appointments, appointments, appointments. I am always scheduling appointments. I have become a master appointment maker. If only there was a way to harness this talent and use it for good. I haven’t thought of it yet. If you have any thoughts, let me know. Anyway, on the bright side, at least I was making the necessary appointments to see the doctors to try to find the answers to my mystery illness. I was working my way towards a finish line and it felt good taking the steps needed to get there.

So I have just reread what I have written so far and I am a little bothered by how depressing and gloomy it sounds. I have only tried to write what has happened to me this past year to give you all an idea of what I am going through, but how boring it must be to read about this doctor’s visit and that doctor’s visit and blah and blah. So I think I am going to stop here for the day. To give you and myself a break. Don’t worry though. I have plenty of doctor’s visits to tell you about in future posts.

I also thought this would be a good time to tell you about an incident I had with my daughter the other day.

So I was sitting in the living room reading a magazine when my 4 year old daughter walked up to me and said, “Dad, do you want me to grow?”. She had asked this question in an accusatory tone as if she thought I had secretly never wanted her to grow. And that she had finally found out my secret and was now onto me.
I was taken aback and said “Of course I want you to grow. Why?”.
“Because if you want me to grow you need to get me dannun-go-guhs. They help you grow.” she said.
“dannun what? They help you - wait. What?!”
“Grow dad, they help you grow. And you can make popsicles out of them.”
“What are you talking about? Where did you hear this?”
“On TV, on a commercial. Dannun go-guhs help you GROW”.
Clarity finally dawned on me, “Do you mean Dannon Go-gurt?”
“Yes. Dannon go-guh. Can we get it?”
“We’ll see.” I say.
This response is good enough for my daughter and she leaves me to my reading, but not before yelling back over her shoulder as she exits the room, “And you can make popsicles out of them!”

This is the reason we prefer commercial-free PBS.
　
　
　
　
　
　
　
　

The beginning

It all started a year ago. September 24^th to be exact. A date I would have forgotten had it not been for my wonderfully organized wife, Erin, who had the foresight to write down the date so that we might know when it all started in the future. I woke up in the morning and went to the bathroom to relieve myself. I stood over the toilet bowl and waited. And waited. And waited. I thought, “This is strange.” After several more moments I was finally able to produce a slow, weak stream of urine. I finished up and left the bathroom making sure to make a mental note of what had just happened. Throughout that day, urinating did not become any easier. In fact, it became more and more difficult to produce any urine at all. The next day was just as bad and it was that evening when Erin and I had a chance to go out to dinner without the kids that I informed her that I hadn’t been able to pee for more than 24 hours. I was starting to get genuinely concerned and we agreed that I would call my doctor the next day. I got in to see my doctor a couple of days later and he gave me a general examination. He examined me top to bottom and then asked me to go pee in a cup. I thought to myself that if I could pee in a cup, I wouldn’t be in your office today. But nonetheless, I went to the doctor’s bathroom and after 20 minutes I was able to produce enough of a sample for them to use. I was then referred to see a urologist and made the necessary arrangements to meet him the following week. During this time, my situation became more and more painful as my bladder was always full of urine and I was unable to fully relieve myself. When I could go to the bathroom, it was in little amounts and with great effort. It was almost as if my bladder had reached it’s maximum volume and I was just able to siphon off enough urine to give myself a little relief. I was never able to empty it completely. My first meeting with my urologist came and he also gave me an examination. His was a bit more invasive this time as he did all the poking and prodding necessary (too much poking for my comfort) and afterwards came to no real diagnosis. He gave me a prescription for a medication to treat an overactive prostate and planned on seeing me again in a week’s time. Well the medication did nothing for my symptoms and by this time my days were becoming increasingly unbearable. I would be in constant pain and discomfort as I had the urge to go pee all the time. Nights were worse. I would fall asleep for an hour and then wake up in terrible pain. I would get up and pace until the pain subsided, try and go to the bathroom, and then hopefully an hour later I would be able to doze off for another hour of sleep before I was awakened by another round of pain and pacing. That was how my nights were - an hour of sleep, an hour of pacing, an hour of sleep, and so on. I finally had my next appointment with my urologist and it was during this appointment that I had my first ever (and hopefully last ever) cystoscopy. If you are not familiar with what a cystoscopy is, you may want to take a break from reading at this time and look it up on wikipedia. I would describe the procedure to you myself, but fear I would mix up the technical jargon with other choice descriptive words that may be too blue for some readers. While my urologist performed the cystoscopy, he was able to examine my urethra, prostate, bladder, and abdomen wall. He said everything looked fine and nothing raised a red flag. I told him when he was done that I had to use the bathroom and he told me that my bladder had looked incredibly full and left the room for me to do so. Of course I wasn’t able to go. My urologist came back in the room and asked if I had any success and I told him I hadn’t. This troubled him, because he had seen firsthand how full my bladder was. He ordered an ultrasound to try and ascertain the fullness of my bladder. Afterwards we agreed that it was very full. And yet, even after trying again, I was unable to relieve myself. This is when he left the room and returned with the bane of my life for the next 12 months. The catheter. He told me what it was and what to do with it. I felt like telling him to stop joking around but before I could, he left me in the room with his nurse as my assistant and told me to give it a go. Now for a catheter to be successful, it is of utmost importance that you use copious amounts of lubrication. I know what you are thinking. “Do I really want to put all that lubricating gunk up my you-know-what?” Believe me. You do. My first attempt was not lubricated near enough and after pushing halfway up I met some resistance and I had a bit more pain than I wanted to tolerate, so I pulled it back out. “You okay?” asked the nurse. NO! NO! I’m not okay!! I’m a healthy 32 year old man! I should not be pushing this 16 inch tube up my penis! I didn’t say that of course. I just smiled and gave it another go. This time I had plenty of lubrication and the tube found it’s way up and in with greater ease. Another important point to make is that right before the catheter reaches your bladder, it must push through your abdominal sphincter first. When I pushed the catheter up to that sphincter, I met such a resistance that I thought something was wrong. I asked the nurse and she just said I needed to push harder. I tried. Too painful. I tried again. Too painful. By now I had had enough and wanted no more of this catheter. Without thinking I pulled the catheter straight out, burning as it came. My nurse went to get my doctor and he returned a short while later. He asked what was wrong and I told him. I couldn’t get the catheter all the way in. He understood my frustration and asked me to try it again, but this time when the catheter gets to my sphincter, try and relax my sphincter as if I am trying to urinate. He said this might loosen my sphincter enough to help push the catheter through. So here I was with my doctor and nurse watching, trying to get the catheter in place for the third time. Remembering his advice, I tried loosening my sphincter as best I could, and lo and behold, it worked! Immediately urine started flowing out the end of the tube and into a receptacle that my urologist placed underneath. Now as much as I hate catheters, the word catheter, and everything that is catheter, I have to admit, I have never experienced such bliss and euphoria as that moment when the catheter was in place and the urine began to flow. I had such great relief that I almost shed tears of joy. For the first time in nearly three weeks, I had voided my bladder entirely. In the end, the receptacle held approximately 1.1 liters of urine. My urologist said that was a lot. I believed him.

An introduction

Okay. So here it is. I have decided to start this blog because I have had a very interesting year concerning my health and throughout this year I have had numerous repeated inquiries as to my well being. I have been trying to keep people updated with my status as best I can, but have recently thought that I might be able to better inform people by submitting updates onto this blog. My hope is that by putting all the latest news at this one location then people can come and become better informed and I may get a slight reprieve from all the questions and inquiries that plague me on a daily basis. Well, plague might be a bit too harsh. I am truly blessed and feel genuinely loved by my friends and family at this time. And it is never just one person or one set of persons that bombard me with phone calls or inquiries. It’s just that I have a large number of people that want to check up on me from time to time and it just happens that I get checked on regularly by someone different every day. I know, I know, it’s a curse feeling so loved and if there is anything this illness has truly taught me, it is how truly loved I feel. And I say that with sincere honesty and without guile - it has indeed been amazing to experience all the warmth and love of my friends and family. BUT having said that, it can become very tiring letting people know how I am doing day after day after day, and ultimately, it is extremely depressing when I have no good news to report. So it is with complete selfishness that I am starting this blog in hopes to get a bit of a break. But by no means do I want you to stop calling and checking up on me. It’s just that in those times when I am unavailable, or more truthfully, don’t feel like answering the phone, you can come here and get acquainted with my current situation and maybe even read some amusing anecdotes, to boot!

So here it is. The blog from my past year and the days ahead.

Let’s start at the beginning.