In this Update:
Summary of Current Affairs
This has been the longest break between updates ever. I just couldn’t do it – even though maintaining this blog and reflecting on life has become very important to me, I just wasn't able to sit down and focus. Somehow, it has all been a bit too much lately. Living in constant fear of getting Ralf sick, even when going to the stupid grocery store, the inability to go to retreats like the theme parks, getting my teeth cleaned at the dentist, or just getting a simple hair cut has really left a mark. In addition, having to witness Ralf’s’ ongoing set-backs (his weight was 140 lbs at one point) without being able to do anything about it, along with dealing with the aftermath of the Germany disaster kind of topped it all of.
I have reached the end of my (mental and physical) capacity, for now, until I figure out how to recover and find some joy and hope. Anticipating "the next shoe to drop" on a daily base can truly take the fun out of life. However, I do enjoy my new job in the Sim Lab very much, even though I now must telework a lot more due to the rise of COVID cases. I also am grateful not to be disabled with a broken back on top of everything, which would have prevented me to do a lot of tasks the way I did. I do feel sore – all over sore, and I haven’t worked out much at all. I just couldn’t get myself to do it; it's hard to explain. But I believe that after I get my overall health into a better state, the body will follow.
Every so often, when Ralf feels ok, we would go for a bike ride, or a hike. It's nothing like what we used to do but it gets us out of the house every conce in a while...
Clear Passage
It has been a struggle to get the adhesion treatment approved and scheduled by Clear Passage, to say the least. Insurance doesn’t pay for it, so the $7,500 came out of our pocket. But that truly doesn’t matter, it needed to be done for sure! Ralf’s health has been declining rapidly, with excruciating abdominal issues, pain, and fear of yet another episode during a time where going to an ED would be a disaster, due to the fudging pandemic. When Ralf finally was confirmed for the second week of August, he was a mess. Yes, he “beat cancer”, but the shocking aftermath of this radical treatment has robbed him of quality of life beyond measure. He was so afraid to eat, and there was no rhyme or reason to what he would eat and how his body would respond to it.
Long story short, we arrived in Gainesville on a Sunday, after a 2 hour drive, and checked into the guesthouse of the owners from Clear Passage. The accommodations were pretty amazing and even included a pool, a theater-like set up in the living room (including 10 leather recliners), and a full kitchen.
At one point, the owners invited us on a mellow boat ride in the evening, which was a nice way to get our minds off the constant worrying. Plus, there were three happy Golden Retrievers on board, making us smile.
Over the next five days, Ralf would have four hours of therapy per day. It was painful at times, but the treatment really helped a lot to restore digestive function by “rearranging” and manipulating the adhesions that are strangling his insides.
With that being said, Ralf was a lot better after the therapy, and he still does his “homework” every single day as instructed. However, the fear of episodes remained, and he had some scary set-back weeks after, which we were able to manage at home though. I was just hoping with all my heart that this was the final treatment to restore his well-being, but it appears there is still a vital piece missing…
Germany: Part 2
Well, as events unfolded, I had to leave Ralf’s side yet again to tend to the crisis in Germany. My mom was just a few days away from moving into her new (assisted living) apartment, but she was so helplessly overwhelmed. I was hoping to delay more international travel due to the pandemic and Ralf’s state of health. But after a FaceTime call with my mom, where I actually took a screenshot because she looked so bad, I had to make this most difficult no-win decision: leaving Ralf behind, or abandoning my mom.
So, I needed to get to Germany to make sure things were taken care off. With very mixed feelings, I booked my next flight. At least upgrading to business class is much cheaper these days, so I did my best to “social distance” on the plane. I also did a rapid COVID test the day before to make sure I am not sick without symptoms.
As mentioned before, my mom moved into her new place about a week prior. My goal was to find a good routine with her, put resources in place, and practice with her to pick up Karl-Heinz, who lives now in the nursing home portion to the DRK. My mom’s apartment is actually in the same building as Karl-Heinz’s unit, which would be so convenient if she could just walk down the hall to get to his unit. However, due to COVID, she wasn’t (and still isn't, of course) allowed to do so and instead has to walk all around the building to the other entrance to pick up Karl-Heinz (after making a reservation).
At this point, it was also time to reunite Bella and Karl-Heinz. She hasn’t seen her master since the stroke happened in July, and now she is in a new place three months later. I arranged the first meet outside, and it went very, very well. Karl-Heinz and Bella were so excited, and he cried when we brought him back later that day.
My mom and Bella were so exhausted after the reunion that both fell asleep right away…
Before I left, I made sure my mom had a good routine with Bella, including a nice path to walk her. I also took her to a new primary care doctor to establish care and to make sure she was ok. I am very proud of her, because she is now able to manage the wheelchair by herself and shuttle Karl-Heinz between her apartment and the nursing home without major issues.
I also signed the sales contract for the house, dealt with the court system, and mowed through the mountains of paperwork to figure out banking, utilities, and insurances.
I think I did my best to put most important resources in place and deal with all the legal issues involved in the transition. So, when I traveled back home, I felt better about the set up than before. But now I had to switch gears and focus on Ralf’s health and my work again.
I did make sure that I was home in time for Ralf's birthday, which also marks our first anniversary. We celebrated at home, of course, eating take-out from the same restaurant we went to after our wedding.
I also did my civic duty and went and cast my vote at an early-voting location in Orlando.
Hanging in There for Now
Life is difficult, life is hard. Wise words of my late friend Libby, who died in August 2020 after losing her battle with cancer. Life even gets harder when a global pandemic destroys any chance of normalcy. Getting screened for infection and having my temperature taking prior to getting to work has become the new normal.
I was hoping to be able to fly back to Germany around Christmas time because this is the first Christmas since the stroke, the move, the forever-changes. But as people continued to dismiss precautions, the virus has been on the rise, causing another lock-down that started in December in Germany, spanning over the holidays into the new year. COVID has also been spreading like wildfire throughout the US. Therefore, I wasn’t able to go. It was the first year ever where my mom had to spend Christmas alone. At least she has Bella... Despite all this, Ralf and I decided to get a tree after all, even though I really wasn't in a merry mood.
Karl-Heinz wasn’t allowed to leave his unit to stay at my mom's place for even an hour, but at least the staff in his unit organized some holiday events (photo was emailed to me from the nursing home administration).
Ralf continues to struggle, and it breaks my heart because he did EVERYTHING he was advised to do, but his life is still without much quality. The mainstream healthcare system is truly letting him down, and nobody appears to be able to help him. Other follow-up interventions included treatment for PTSD and anxiety, new medications, seeing a functional training coach, and other PT treatment (with micro-currents for the scar tissue). So far, every treatment has helped to address some pressing issues, but he still hasn’t found the “final piece of the puzzle” that would enable him to have true quality of life again.
At least we made it through this horrible year. Somehow. I am grateful for the outcome of the US election (after much drama), but it will be a long way to counter some of the damage done to this country.
For now, I will focus on the only thing I have some control over: my work. Due to the rise of the virus after Thanksgiving, I was issued equipment to work remotely.
Even though I am teleworking most days right now, I still get some hands-on activities here and there. I even created a thyroidectomy incision for a simulation, which significantly increased my appreciation of surgical suturing.
I also was fortunate to receive my first COVID vaccination on December 18th, with my second shot scheduled for January 11th, 2021. Maybe, just maybe, this could be the beginning of the end of this awful pandemic that has made tragic life events even more intense.
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All one can say is WOW! Puts my frustrations in perspective. Hang in there! Day by Day.