It’s been a long, strange week. I’ve been resisting coming here and posting, because I had additional information, but no answers. Now I do.
Rather than jump right to the fun stuff, I want to share the rest of my week with you, because this blog is about more than me finding out what’s wrong. It’s really become about the hundreds of thousands of people out there who have medical problems, but no answers. They have no advocates, no friends-who-know-someone, and most importantly, they have little or no hope.
Hope is essential when you’re facing a struggle or adversity. Without hope, you have no chance. Hope can be seen in the eyes of those who love you. Hope can be seen in words you read in an email or text message. Hope lives and dances in your mind, and sometimes it dwindles through no fault of your own, but rather because the road in front of you has no sign of hope left. It’s just an empty road, laid out for you to travel, and that’s no way to feel. I’ve seen people with no hope in their eyes in waiting rooms and read their words in support groups I’ve joined. I’ve decided that somehow, when I am better and able, that I’ll help those that lack hope or direction while searching for their own answers in an incredibly difficult medical landscape. If I can provide even the tiniest bit of hope to someone in a similar situation to my own, than I’ll truly feel like I’ve given back to all of those who have provided me with prayers, kind words, and most importantly, hope. Thanks to everyone for your support and kind words throughout the past 8 months and moving forward into this holiday season. You’ve all given me exactly what I needed to keep moving forward during all of this, and that feeling can’t be put into words that could ever truly show how much it has meant and continues to mean. Thank you all.
My last post, A New Path, explained my latest neurologist’s plan, and this week, that plan was put in motion. On Monday, I had a chest CT and a battery of blood work taken. The chest CT was very basic, and not in any way relevant to this post or my condition, but it was done very professionally and he techs who did it deserve some credit for making sure I was comfortable throughout the very short procedure. Once completed, my lovely wife Meghan took charge and drove me and my wheelchair, my personal all-black limousine, to the lab, checked me in, and swiftly maneuvered us to a nice, convenient area to wait for my name to be called.
While sitting there waiting, I was wondering, sometimes out loud, what tests had been ordered, what ELSE could they possibly have left to check? Meghan has become a professional waiting-room attendant and despite my frequent interruptions, she was able to get some reading done, and even managed to squeeze in a work call, all while answering my questions. She has provided me with an unbelievable calm throughout this entire journey, and I am now hyper-aware of her importance in my life. A younger woman steeped through the door, called my name, and we were off. Once we arrived in the room, she mentioned, in a somewhat astonished tome, that I was having A LOT of tests drawn. I was aware that 3 different people had ordered tests prior to my arrival, including 2 Neurologists, and a Nurse Practitioner. I asked my lab tech, who at that moment was printing a book’s worth of vial labels if it would be possible to get a printed list of the lab work being performed, and she said she would see what she could do, and exited the room, leaving me to myself in a small room consisting of 3 walls and a curtain behind me, which was half open and exposed to a main hallway. I liked being able to hear what’s happening around me in situations like this. The organized chaos has a sedative effect on me, and allows my mind to wander.
I found myself focusing on the art-work on the wall in front of me. It wasn’t much, but it drew me in, deeply. On the pale yellow wall in front of me were 2 butterflies, probably about inches tall. Each was a different color, one orange and one blue. They weren’t the same butterfly, so there was some variety provided, and it was enough to get me thinking. Were these stickers? I found myself unable to determine the answer by tilting my head in different directions, trying to find an edge in different angles of light. If I hadn’t been perched in a wheelchair, this is definitely something I would have physically checked. I needed to know if someone had painted these 2 butterflies on this wall, in this spot, for a reason, or if they had peeled them off of a paper backing and stuck them around the office randomly, and these 2 just happened to be here, in an off-center spot on the wall in front of me. I did notice the blue one had some glitter in it, which had me thinking it was a sticker. I couldn’t stop thinking about it, and luckily, the woman who had checked us in entered with a couple sheets of paper for me. It was the list of tests that were about to be drawn. I looked at them before my lab tech came back in. As I looked over the papers in front of me, she apologized for the delay, but one of these tests was so infrequently performed, that she was having a hard time locating the vial that she needed for it. I didn’t even realize that she had been gone very long, thanks to the butterflies on the wall. She eventually came back with the required vial, and it was time to get some blood drawn.
I’ve never had a problem giving blood, or having an IV put in, or pin pricks. I have nice big veins and it makes it easy for the lab techs, in turn making it easy for me. As she started lining up all of the vials, 16 in all, I prepared for the needle. During the CT scan, they injected a dye into my bod through one of my arms, and my assumption was they would use my other arm for this process, and I would just have to peel off 2 band-aids when I got home, but one of these vials needed to be filled with blood from an arm that had not been tied off with a tourniquet. I still only left with one hole in each arm, as my lab tech swiftly finished up and brought me back to my wife, who was still face-first in her book, patiently waiting for me.
After a trip to the doctor, I was tired. I didn’t do much for the remainder of the day, and I headed to bed early. Meghan had some travel days ahead, so I needed to rest up so I could take care of myself, as she was worried about leaving me alone Tuesday and Wednesday, before arriving home late Thursday afternoon. I knew it would be fine, but if I could pull it off without any problems, it would give her some peace during her trip and in the future as well. It stinks having someone worry about you like they would a child, and while I understand and appreciate her concern, it doesn’t make it any less difficult to deal with.
My sleeping habits have been very unpredictable the last few months, and Tuesday just got weird. I went up at 8 or so, fell asleep at 9, and woke up at 10. The volume on the TV was too loud, and rather than turn it off, I turned it down. I tried to settle back in, before realizing that the tennis ball I had used to coax my dog into the bed earlier was now directly between the mattress and the small of my back. It was an absolute chore removing it, but I managed and fell back asleep.
I woke up again, and after rolling over to check the time on my phone, I saw it was 2 AM. At that very moment, the 4-hour automated shut-off of the television kicked in, and the room went silent and black as it switched off. Immediately after that, my phone alerted me of incoming emails with 3 consecutive audible clicks. I was curious, and super awake, so I opened up my email and saw 3 notices regarding new lab results. When I logged on to my provider’s website, I quickly opened up the page titled “My Test Results”, and this is the moment, for this week at least, I started going crazy. I had some extremely high results on a couple of the tests ordered, and unable to drift back to sleep, I started researching what these results might mean. I did this for 3 hours, and I was more confused and afraid of what was going on with my body than I have ever been. There were so many possibilities, and some of them were not very promising. At 5 AM, i fell back asleep, and I slept until 10 AM, hours later than my normally scheduled wake-up. When I came downstairs, I found a sliced Granny Smith apple on a paper plate. I had asked my step-son to leave it there for me if he had time, since I am no longer able to use the apple slicer or a knife to do it myself, and I refuse to eat an apple from my hand. I hate eating apples that way, and I hate watching people eat apples this way as well. It was sliced before 7 AM, and in the 3+ hours since, it had only slightly browned. I was thrilled with this discovery, and stood at the counter with my walker, and devoured that apple. I was feeling generous, and shared a small bite with Benny, my dog before letting him outside and spending another day on the couch, in the living room, looking at the screens on my phone, laptop, and computer. It was growing old, doing the same, boring routine every day. I was growing very impatient for my appointment on Friday, and it eventually came. Meghan made it home Thursday afternoon and we ate Indian and Thai food, watched an episode of American Horror Story: Cult, and then headed to bed.
We left around 2 PM, and we had a full plate of events ahead of us. Doctor at 3, tailgate at 5, football game at 7. Here in Wisconsin, it’s football playoff season, and my step-son is the starting Safety for the defending state champions. They were playing their level 2 playoff game on Friday night, and I was nervous with anticipation all day long. It was also only 38º F when we left our house, so we had to pack extra clothing to change into after the appointment, and jackets as well. We (Meghan) loaded up the SUV, and off we went.
Seeing new doctors has become a routing for us, but this guy had a different vibe before we even started. His last name was Finseth, and the first thing I noticed in his office was a picture explaining how to pronounce his name. It just set him apart, knowing right away that he had a sense of humor. He was a younger guy, and extremely friendly and kind. He also had with him an additional doctor, who’s name I don’t recall, but he did tell us she specialized in Geriatric medicine. Dr. Finseth was on call at the hospital, and I just assumed he brought another set of eyes to observe me. She was also extremely kind, and her smile brought me a sense of calm, which I needed. I was nervous, but I quickly relaxed, and for the next 1 1/2 hours, I answered questions, did some walking, and my favorite part of neurological exams, the simple dexterity tests that always make me and Meghan laugh.
Being asked to touch the tip of your finger to your nose and then to the fingertip of the doctor in front of you should in no way be amusing, until someone is struggling to do it. Meghan and I laughed as I missed the mark again and again, but the biggest laughs came from the next test. With my left palm pointed up and extended slightly in front of me, the Dr. asked me to slap it repeatedly with the palm of my right hand, then with the back of my right hand. I couldn’t stop laughing as my hand flailed uncontrollably around it’s target. It was incredibly awkward looking, and one of my favorite things about Meghan, is her understanding of my needs. I thought this was funny, and it was, so we laughed together and kept a serious situation light, and by doing so, made it easier to process how much whatever-the-hell-this-is has taken from me. An example of the tests performed can be seen here.
The doctors left the room briefly and had an assistant run some blood pressure readings while I was lying down, then standing up, then again while sitting. She then opened the door and let them back in. His look had changed, and I knew, finally, I was going to be told something, anything, about what was wrong. He told me he had narrowed it down between 2 possibilities. The first was called Cerebellar Ataxia, which affected the cerebellum, the part of the brain that controlled movement. It could be treated, usually with relatively quick, positive results, by administering steroids via IV. The other condition he thought it could be is called Multiple System Atrophy, and unfortunately, there are no significant treatments for this condition. There are treatments, but the results would not be as significant as they would for the first condition.
He then laid out the plan. First, the IV steroids. He would put in the orders, and after this weekend, they would call and get it scheduled, either at a hospital or at an infusion center. This could happen soon, maybe even this coming week. Part 2 was an imaging procedure called a DaTscan, which involves injecting a radioactive drug into your bloodstream, allowing it to highlight areas of the brain and capture images with a SPECT camera. This procedure is used to help diagnose parkinsonian syndromes, including Multiple System Atrophy. Finally, in about 2 weeks, a follow-up.
We made it to the tailgate, and then watched our boys win their playoff game and once again advance to a Level 3 game. I’m already nervous.
So once again, it’s more waiting, but this time there is a clear path in front of me, with signs showing me the right way. There’s a guide. There’s satellites above tracking my position. There’s a destination. There’s HOPE…
Check out my newest “Tune of the week” on the right side of this page!
Favorite song listened to during this writing: Hey Jude (MOM!!) – The Beatles
Total writing time: 3 1/2 hours (2526 words)