When Anxiety Becomes Reality

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...

For 2 days last week, sitting septic with 103.1 fever with no break, I couldn't move. I couldn't even angle my body or position myself in an easier way for the doctors. Sorry, it was not happening. 4 weeks prior, I was deadlifting 405 lbs, doing 3-4 intense peloton rides a week, walking 7-8 miles each Saturday and bench pressing up to 185/190lbs in addition to the other forms of regular weight training I was doing. But for 2, maybe even 2.5 days, I couldn't move.  I've heard my share from people poking fun of my workout regiment prior to getting sick. I heard people telling me to slow down or be careful or why I was even trying so hard. That last question I still don't have an answer for. I don't know what motivated me a few years ago to set out on a healthier lifestyle journey, all I know is that today, it's helping save my life. My heart remains healthy no matter how many EKGs or Echo Cardiograms they want to run. My valves are terrific no matter how many ...

On Friday I was told if everything stays stable, I needed a PICC line installed Monday (They dont "do those" on the weekend) and be sent home Monday.  Within 12 hours of this happening, my body threw a loop.  99.6 temp type of loop. I panicked. Full Panic. Not the type of panic attack that makes you scared, but full blown loss of hope, angry panic. The nurses tried calming me down, saying it could be a fluke, lowering the AC in my room to a more normal temperature as it was warm in there, and we would see what the next vitals reading would be. 2 hours never took so long. I wanted to go on full rage and throw things against the wall. No matter what anyone tells you, "take it one day at a time" or "you're in the right place, better you have a fever here than at home", when you're THAT close to progressing forward in your treatment and there is potential setback, the room you've been in all week transforms into a 12 x 12 cell, and you feel like a ...

5/7 Frustration is an emotion I don't know what to do with. Someone told me yesterday about a book they read that underlined the 3 solutions to life's problems. 1. Accept it. 2.  Change it. 3. Leave it. So, for example, if you are at a dead-end job that you cannot stand, you can accept it and make the best of it, change it by confronting that which you believe is making you upset and making it better, or leave it and find another job. They equated it to my situation. I can't change it. I am sick. There's nothing to Change. I can't leave it/Ignore it, because that is just not an option. My only option is to learn to accept it. And that's what I'm trying to do. When faced with the variety of emotions that I am hit with on a daily basis, I do my best to accept it. See the good, see the bad and marry them, I've said this in a prior blog. But frustration and uncertainty are 2 extremely hard emotions for me to process. The answer is to clearly accept it. Accep...

5/6  "Ya know", she said to me, "If you came in here and had a BRING IT ON ATTITUDE, saying things like 'It's no big deal', or 'this will be a breeze', then I'd be concerned. The fact that you are self aware enough to realize that there will be ups and downs, positives and negatives and EXPRESS that so openly, tells me you are ready for what this journey will bring. It's the people who come in fooling themselves we have the most issues with" My fever remains down for a second day without using Tylenol or anything and then a real defining moment. My morning labs came in. As I watched the nurse erase the prior days' labs, 2 things occurred to me: 1. I definitely should have paid more attention in BIO class because I have been SO LOST through all of this 2. Her penmanship, especially for writing on a wipe board, was impeccable.  But I digress... My white blood count had not doubled from the day before, but rather TRIPLED! My Hemoglobin c...

It's 2:30 AM, maybe 3:30, by now it's certainly 4. I am sweating through every piece of clothing i have on so I immediately strip and call for some ice packs. She says the beeping I hear is coming from the outside, but it's not, it's in here somewhere and it's driving me insane. I've got 3 IVs in and I'm in the ICU. The most common question here is "do you know where you are?" Let's back up. It's Monday, 5/3. I am scheduled for a routine appointment to see an allergist. They need to know if I am really allergic to penicillin or not. The appointment is for 8 AM. I tried calling over the weekend warning them of my rash explaining how the doctor will likely not be able to determine anything in my current state, but nobody seemed to care. I showed up, they essentially threw me out because i have a rash. Yea, exactly. I'm not feeling great and have the shivers even tho i dont have any fever. Maybe I'm anxious? maybe my counts are low? on...

I received a tentative, but more likely confirmed schedule from the Hospital. By all accounts, this is the fastest moving transplant regiment that they have seen and cannot believe there is a schedule already for this. I have some more testing tomorrow, Tuesday, Thursday and Friday. In essence they have squeezed weeks if not months of testing into a matter of days and while miraculous, it's draining and nerve wracking. But if all goes well with the remaining "formality" type testing, I am back in the hospital on Saturday 5/8 to begin prep and transplant set for 5/13. After that they monitor for at least 2 more weeks before a discussion of discharge even begins. Great news, right? I'm not so sure.  "But you're going in to get better!"  Well, I equate it to looking forward to an event taking place a few weeks from now, but knowing that a dreaded event comes in between. So while I know this is the beginning of the end, I know I still have to climb that hurd...

Friday AM I woke up with a rash. OK. I am OK. YOU ARE OK. those were my initial thoughts. I called the Dr's office who told me it was a normal, likely delayed reaction to the blood transfusion I had the day prior. I was itchy and gross, but they said Benadryl and you'll be fine. Saturday I woke up and it was even worse. I called the Dr AGAIN who put me on a steroid. I took some yesterday, Saturday, and today, Sunday Let's hope this works.

  April 29, 2021. One for the history books. Because my bloodwork was so "meh" on April 28, I came back on April 29 for some transfusions. 2 x bags of platelets (this was not new for me, i've had many-a-bag prior, and this time a bag of blood. OK, I thought, no big deal, probably the same time/feeling. The problem is April 29 was filled with so many other appointments, an EKG, Chest X and Echo Cardiogram. So timing was of the essence. I showed up at 8 AM, on time, went to the transfusion center, got into a big nice comfy chair and met some really over the top NICE nurses. Unfortunately, the platelets and blood that had been ordered the night prior to avoid delay, were....delayed. I have found this to be a common theme in most hospitals. Nothing actually happens too quickly, so lower your standards. It's almost never in and out. I took the platelets, no issues. But the blood transfusion hurt. like REALLY hurt. oh, and also, as opposed to 30 minutes, blood is a 2-3 hour...

  I've got GAD (General Anxiety Disorder) In March I was totally fine according to all labs On April 18, I was sent to the ER for testing due to burst capillaries and easy bruising and bleeding on my body.  On April 20 in the afternoon, I was diagnosed with Idiopathic Aplastic Anemia. On April 21 I spiked a fever and an order to transport me to Hackensack hospital where they could better care for me. On April 22 in the early AM, I was transferred successfully to the care of some of the finest doctors in the country at HUMC. By April 23, a sibling donor was being tested as a potential bone marrow donor match On April 25, I was discharged home, with a plethora of pills, needing to monitor my own vitals and ensure I don't get sick to avoid further hospitalization and infection that could cause complications. April 25 was to be a happy day. It wasn't. I had a calendar of appointments set up, a book filled with "what ifs", folders of business cards and no idea how to p...

Life is funny for some Or Ironic for others (cue Alanis Morissette) Filled with Joy for a few Or even with sadness for many Life is a mixture of all of the above, and we learn to value life and its lessons. I’ve heard much-a-chit-chat recently around the digital world, and that’s to be expected. We appreciate everyone’s deep concern. Just please be sure not to mix concern and care with rumors about what you may have heard or what may actually be going on. Don’t get into arguments about “i heard this” vs “i heard that” because up until a week ago I KNEW I was fine. Things can change rapidly. And they did. “WHAT WERE YOUR SYMPTOMS!!” On Wednesday 4/14, I had a nosebleed (rare) that was difficult to stop and on that same day I had a dental cleaning that let’s just say didn’t end very well for the hygienist who had to clean the room. But really shortly thereafter I developed what looked to be a prickly rash (now known to be petechiae - look it up) and I received a bruise very easily from d...