Day To Day

The holidays have been great so far. I’ve enjoyed seeing friends and family, all of the delicious treats, and the joy on people’s faces as they opened the perfect gift. I hope all of you have had a great season as well. 2019 is just around the corner…

I haven’t been writing, not because I don’t have anything to say, but because I have been trying to become a more efficient writer. In high school I never took a typing class, and since I basically have to teach my hands how to type again, I decided to relearn typing properly, so I have been taking typing lessons online at typing. com. I am getting faster, but not much overall. According to the site, my speed is a whopping 15 WPM, but my overall accuracy is 99%, so that’s something. Prior to the illness, I was MAYBE at 30 WPM, so I know over time and with continuous practice I can and will surpass that. Heavy goals!

Over the holidays I had the opportunity to speak to several readers of this blog, and many were anxious to hear more about what’s happening on my journey. While I am still improving on an almost daily basis, I have had several setbacks in the past couple of months. I’m going to explain them and then lay out a typical 3 week period for me, as I have my treatments at 3 week intervals.

The first setback came a while back, and in my opinion, was the cause of the rest of the things I’m still dealing with today. As many of you know, I have been taking heavy doses of Prednisone for a substantial period of time. At one point, I was taking 100 mg daily, and over a long period of time, I tapered down to 10mg daily with no issues along the way. My doctor suggested stopping it altogether, with a daily supplement of Hydrocortisone to help with any withdrawal symptoms I might experience. I was nervous to stop, but I REALLY wanted to be done with it, so I jumped right in and things were great for about a week, and then all hell broke loose.

The first symptom was a sharp, shooting pain in my ribs. Certain positions would trigger this pain, but initially it was just sitting. Over the next few days, the pain progressed to an intolerable level. The only way to describe the sensation is this: Imagine someone sliced the cartilage between each of your ribs and when the leftover pieces touched, they sent waves of pain to your sternum and spine. EVERY STEP. EVERY MOVEMENT. PAIN. It was so bad I couldn’t roll over in bed, and since I couldn’t sleep, it made for some incredibly long nights staring at the ceiling waiting for morning so I could move without waking the wife. Eventually, I had to give up the fight and I took 10 mg of Prednisone. Within 30 minutes, the pain was once again bearable, and after a few days of this, that pain went away. That pain went away but opened the door to other pain, which has changed my day-to-day functionality. A minor setback in this crazy journey, but a setback nonetheless.

I think it’s important to put pain in perspective. I am no stranger to pain. I have had Psoriatic Arthritis since the mid nineties. My right knee has been scoped 3 times (2/10 on pain scale, mostly prior to the surgeries), followed by a partial knee replacement (5/10), which became infected a year later (MRSA), which required a replacement of all of the plastic parts, essentially another partial replacement (6/10). A few years later, those pieces became misaligned, and that meant ANOTHER KNEE REPLACEMENT, this time a total knee replacement (8/10). 30 days later, I stopped taking the blood thinners, which set off a major heart attack (6/10). I followed that up with the incident that got me to this point, the internal bleeding in my lower abdomen (10/10). I am explaining this so you understand that I have an ongoing relationship with pain. In between all of the above items, I have dealt with ongoing arthritis pain, mostly in my back, neck, wrists, hands, and feet. Pain has tried for decades to make me it’s bitch, and it has failed, but I  will give pain this: It is persistent, and that persistence has caused depression over the years, and while my attitude during all of this has been positive, the depression has slowly crept back in, not enough to really cause concern, but enough to give me something else to keep an eye on.

The strangest thing with this recent pain is it moves around. For 2-3 months, it was in my back, a never ending muscle cramp that stretched from the shoulder blades to the lumbar area of my back on both sides. In addition to the non-stop joy of a stubborn, large muscle cramp in a primary support muscle, my right leg was swelling from below the knee to the start of my toes. At times my foot looked like a latex glove that someone had inflated, but not enough to inflate the toes. it was, at times, alarming how large my foot had gotten. I was given a diuretic and compression stockings to control the swelling, but if you’ve ever taken a diuretic, you know how often you have to urinate, and all of those trips to the bathroom with limited mobility and a back that won’t, under any circumstances, stop screaming at you, became a lot of extra work. I just tried to look at it as additional exercise, and then the pain switched it up on me…

My treatments happen every 3 weeks, with plasmapheresis on a Monday, and the Rituxan infusion 2 days later on Wednesday. Typically, the pain and swelling set in by Friday or Saturday, and lasted about 10 days. I had the infusion on the 19th, so I had the stockings and diuretics on call, and while there was some minor swelling this time, the back pain didn’t really set in, instead it showed up, in grand fashion, in my right wrist. As a right handed individual, and the symptoms of the ataxia being far worse on my right side (less grip strength, more tremors, and overall less control), I didn’t need this. While this pain is slightly more bearable than the back pain I was expecting, it affects my day-to-day function far more. 

I use a walker to get around the house, and one of the requirements of walker use is using your hands to support a portion of your body weight. An incredibly inflamed wrist in no way helps that, so my mobility was instantly limited. The back pain went away, or at least substantially subsided, when laying down. The wrist pain never goes away. Ever. There is no comfortable position to rest it. every hand movement can be felt in the wrist, and as that pain increases with use, it begins to radiate into the hand, and eventually, it’s either pain medication, which I hate, or just hoping that I eventually get tired enough to try and sleep, which means gripping and pulling myself up the steps using the handrail, no easy task with a bad wrist/hand. If this had happened 3 months ago, I would have been limited to the main floor of the house, sleeping on the couch, but fortunately, I have made enough progress to overcome these setbacks. While it isn’t all fun and games, I still consider myself blessed and consistently advancing in my recovery. 

A couple of days ago, I walked, sans walker, about 15 total steps from one end of the livingroom to the couch, turned around, and walked back to the other end again. At no time did I reach for anything for support, and I maintained relatively good posture throughout. In the next few days, I plan on trying a trip from the front door to the couch, the equivalent of a half marathon for me. Wish me luck!

I hope you all had a great holiday season, and plan on 2019 being the best year ever. Set some goals and absolutely crush them! God bless