Costa Rica, October 2019. That was the last time I took a trip. (No, I am not counting my drive to Pennsylvania last summer. There was not an ounce of pleasure in that trip.) Obviously 2020 was a wash travel-wise for everyone. I had planned to go to Hawaii with Rose in the spring and to Italy (HA!) with Kyle and Rose in the fall. Both were cancelled of course. And as I mentioned, I cancelled my trip to California that was supposed to take place next week to visit Rose and Susie. I’m so bummed about that.
I love to travel. Aside from dogs, it’s where all my money goes. I love planning trips even if they’re far off in the future. It gives me something to look forward to. So…not much to look forward to last year or this.
However, I am typing this from Silver City, New Mexico, about 4 hours southwest of Albuquerque. Nope, it’s not Hawaii, and it’s not Italy, but it’s actually very nice! Kyle and I are here for the week, and Silver City is the perfect jumping off spot to many beautiful areas in this part of the state.
I feel like this is a bit of a test for me. My symptoms that began over two years ago started with my nearly passing out with physical exertion. That prompted me to get to the doctor, and that started the year-long road to this diagnosis. I think I had a total of five of those episodes, most of which happened outside, such as when I was pushing my friend in his wheelchair or climbing the stairs to the Acropolis. But I recall at least one that happened when I was doing nothing. I was standing listening to a band at a charity fundraiser. All of a sudden, I was hit with it again.
Those episodes freaked me out because they all happened before I knew what wrong, what was causing them. I knew physical activity did at times, and at least once I tried to induce it with a long evening of swimming. Nothing. I felt fine.
My hemoglobin at the time (per my visit to urgent care) was 9.4. Low. It was thought (and still is) that this accounted for my lightheadedness and dizzy symptoms. Since that time, my hemoglobin has lingered in the 9s, with occasional dips into the 8s and peaks in the 10s. Not much has changed in that respect.
But the net result has been a fear on my part of doing much of anything. As I’ve said before, I’m about as far from being an athlete (and still be breathing) as one could be. But I used to be able to swim a mile, walk five miles, and go on the occasional hike. But nearly all of that stopped. Part of the reason was my fear of inducing one of these attacks, but the other part was that I just felt like shit. I was too tired to go for a walk on the weekend or suit up and go to the pool. I was just trying to get through the day. This hasn’t changed significantly either.
So, as I said, this trip is a bit of a test. Not that we’re going on five-mile strenuous hikes. But we did go on a wee hike (“hike” might be too strong a word, although it was more than a stroll) yesterday and today. Tomorrow we will go to the Gila Cliff Dwellings National Monument. The hike to the cliff dwellings is stated as “moderately strenuous.” We’ll see how it goes. We’ll go slowly, no doubt. I hiked up a bunch of steps in Costa Rica after visiting a waterfall and made it okay (slowly), but that little bit of nagging anxiety that it might all turn to crap was with me every (literal) step of the way. Hopefully tomorrow will go well.
I have to say that even these short hikes have been a confidence booster. After my serious decline in November last year, walking to and from the waiting rooms to get patients would wear me out. The fact that I could walk for a couple hours without passing out feels like quite a feat.
I know this will sound very dramatic, but over the past year I’ve felt nearly disabled. To go from a somewhat normally-energetic person to a slug living all my non-working hours on the couch took not only a physical toll but a mental one as well. I am hopeful this little trip and the minor successes in being slightly active and not falling apart will spur some further attempts to keep moving. I’m so incredibly weak, it’s pathetic. I know it will take me a long time to get back to where I was before, if I even can. But I think even a little bit of strength will help.
In other news, I used the Trulicity pen for the first time tonight. I guess I have to come to grips with the fact that I have diabetes. I mean… I’m now using medication for diabetes. Can’t really deny it any longer. I wonder (another question for Dr. T) once I’m off the Kyprolis with dextrose and the dexamethasone is down to 4 mg a week, if it’s possible for my blood sugars to go back into the normal range. Or if this is here to stay. He might not know. As he tells me, I’m a guinea pig.
Low, Low, Low 