When Anxiety Becomes Reality

how are you? what's next? how are you feeling? what do the doctors say? when are you going to be totally better? WILL YOU EVER BE TOTALLY BETTER? are you up for a visit/phone call? These are the typical questions I get asked by very well meaning people on a daily basis. Bone Marrow Transplant Chemo HHV6 Meningitis (twice) parainfluenza Hydrocephalus (head surgery required) Stroke (I think twice, but definitely once) Kidney stones Epstein Barr Virus countless spinal taps, CTs and MRIs. To give you an idea, the above is what my family and I have gone through the past 8-9 months or so. IN ADDITION, my entire family got covid at the same time, but luckily are OK now. I've been in the hospital well over half that span and feel like the luckiest person on earth whenever I get to go home to see my wife and children, so I apologize to those who I have been less than timely with getting back to. I've had to learn how to walk again twice during this span and miss my pre-sickness phys...

Yea, it still affects me. This time perhaps more than the others as it was an "extended holiday" weekend and it's not as busy in the hospital which generally is a good thing, but I found the staffing to be limited s well. Staff was split too thinly amongst the active patients and although I admittedly, at this time, am not a high demand patient, when I need things, I'd like them in less than 15-20 minutes.  So what is it about weekends that makes me so sad and down? Well, for one, the knowledge that nothing is going to happen kinda stinks. There will be no headway in your case, everything stops, there are no answers and nothing new to be shared or that happens. That's probably the worst of it.  Secondarily, it reminds me of my mental loneliness. Physically there are many people who check in, often, on me. But mentally, there's no escaping my thoughts. Nothing to look forward to. Nothing to do but sit and hope for the next business day where there may be answer...

 If only the title were true. In truth, I have too much to say, too many emotions and too much emotion, I don't possibly understand how writing them down will help. But like eating my meals these days, I'm forcing myself to just do it, because it'll keep you healthy. Friday, 5/21, roughly 5:15 AM: Being told and warned you need too keep yourself hydrated comes with its ups and downs. Literally. Up from the chair to bathroom and back down to the chair or bed. While I am used to 100oz a day of liquid, I'm not used to more and I was told I needed more. 5:15 AM was one of the UP moments. Had to get UP to use the restroom. I got up, and was very light headed, and ran back to bed. Take 2, same result. Take 3, I made it to the bathroom, and then the lights went out. By the time I knew it, the ambulance corp was there and away we went to the HUMC ER. I feared the worse as I tend to do. I will end up in the ER, then ICU then there goes another week+ of my life and there goes our...

Let's get one thing straight, I NEVER liked roller coasters to begin with, however for those you who DO, I HIGHLY recommend staying off this one. One year at Six Flags Great Adventure, my wife, an avid roller coaster rider, demanded I go with her on "The Great American Scream Machine". I had no less than 6 panic attacks waiting on that line and as they strapped me in, I didn't feel secure enough and was flailing my arms in the air like a maniac to get the attention of the high 18 year old to come check my seatbelt. As we were about to "take off", I noticed the car in front of us stall on the climb. I screamed so that someone would notice and not let us go and be stuck. Of course all my screaming and panic did nothing because the people who run the rides notice these things, but as they let us off the ride due to the delay - it made my wife VERY happy watching me panic and she laughed at it not on for the rest of the day, but still today, probably 12-13 years...

Yesterday was a sunny and fair weather day. At 9 AM, I went outside to the front of my house, set up a chair, took off my mask and sat there, staring at the sky. Sounds boring? It was. Fabulously and gloriously boring. The happiest boredom I've had in weeks.  My wife joined me at one point and we even sat together. Doing absolutely nothing but basking in the weather. Between the hours of 9 AM and 1 PM we had a number of visitors who passed by. Everyone was sure to keep their safe distance, but in that span of time, I must have seen 15-20 people all "happy" to see me (at least that's what they said) - sorry, low self esteem. I had extremely knowledgeable doctors visit to discuss my case and numbers, offering tips and other forms of help, I had friends who just saw me and stopped to say hi.  As a natural born cynic, I tend to hate people and have 0 faith in humanity (sorry, harsh reality), but yesterday, seeing people, felt great. We did it in a safe way and nobody stay...

With each setback, or new test, or additional days added on to the "timeline", I lose my battle with my mental health. Number 1 fear: getting sick again. If I am now being asked to stay home for X days/weeks while they finalize some things, how can they guarantee I won't wind up sick again given my current physical status. I've become overly obsessed with how I feel walking up and down steps. It legit winds me and I need to limit that activity as much as possible. My heart rate soars, i start to sweat, and it puts me into a panic. Is this an indication of another fever? I take my temp. Of course it's elevated! My body just worked OVERTIME to climb my steps. OK, relax. get into bed. have a drink. slow your heart rate, check again. 99.3? I'll take it, but it's not 98.5. Am I getting sick again? How long will I be stuck in the hospital for this time? Will it be as serious as the last time? What will the setbacks be? This is my struggle. Not daily, but each an...