I try to update and post something new to my blog at least once a month, but on the social media front I’ve barely been visible lately and I think some of my friends were starting to worry. So,to keep them in the loop, and anyone else who’s interested, here’s a brief update on what’s been going on with me lately.
Like most people, especially those at high-risk for catching COVID-19, I’ve been lying low, masking and distancing when I venture outside and try to avoid crowds of any size. I keep my visits to the grocery store to a minimum, and do the bigger shopping through stores that offer curbside service. There are certain in-person medical appointments I can’t really postpone or delay, but I do all of my routine check up visits online via Zoom.
As far as COVID-19 19 surveillance goes, so far I’ve had 9 swab tests done. Some of them required when I’m admitted to the hospital for my asthma, others were for out- patient procedures, and a couples times after visiting the Dentist. Knock on wood, all the tests have been negative. I also had the antibody test done to see if Id been exposed to the virus in the past. That test came back negative as well.
[ *TIP*…… If you’re thinking about getting the antibody test, consider donating blood through the American Red Cross. From now through the rest of the month or so, they’re doing free COVID-19 Antibody tests on all blood donations. You give life-saving blood, and get to find out you’ve been exposed to the virus. It’s a win-win. If it turns out you have antibodies for COVID-19, you may be able to donate your blood to help sick Covid patients directly.]
On the breathing front, things have been up and down. I’ve had my usual mild- moderate exacerbations now and then, but have lucked out and not needed hospitalization in well over a month. That good streak though, might not last much longer. Ironically, as I write this post I’m actually flaring and on high dose prednisone. I’m holding my own for the time being, but one of the difficulties in having BOTH Severe asthma and Glottic Stenosis (not to be confused with VCD), is that it’s very difficult tell which one is causing the symptoms or flare up if you will. It could one or the other, or it could both conditions at the same time. I had my last glottic dilation surgery back in December 2019, and up until just 3 months ago when they checked, my upper airway was still fully patent. But just within the last few days it feels like my glottis(the opening or space between the vocal folds), is starting to narrow again, making it a more difficult to breath. The thing is, there’s no way for me to tell for sure if it’s my vocal cords unless they actually look down my throat with a scope. And the only way they can do that on an urgent basis, is for me to go to the ER. If I go to the ER, they scope me and it turns out that my cords are fine, then that means it’s my asthma that’s been acting up all along. And if that’s the case, they might insist I stay in the hospital to treat it, because we all know what happens when my asthma gets out of control. See my dilemma?
As far as my breathing problems in general, in addition to my Pulmonologists and other caregivers, I’m now being followed by the Palliative care team, which includes Palliative care doctor, a medical social worker and a Psychologist. The verdict is still out whether this type of invention will make a difference, but I’m hoping to at least learn some new ways to deal with my increasing breathlessness and my apparent PTSD brought on by so many ICU admissions. In that regard, and judging from what I’ve been through personally after spending so much time in the hospital, it’s apparent to me that many of these COVID-19 patients who are lucky enough to survive lengthy ventilator or hospital stays, are also going to be suffering the effects of PTSD. They too will need counseling.
On top of ongoing health issues, the pandemic lock down and the wildfires here in California, there have been other stresses to deal with. The loss of both pets and human loved ones has made everything feel that much worse. In May, the love of my life in cat form (Winston), passed away. I’m still very depressed over it. 2 weeks later, a young friend of mine from Canada died unexpectedly from a brain aneurysm. Chris was only 30 years old. Then just a week ago, 2 more of our cats had to be put to sleep for failing health. The sadness never seems to end. But, as much as I miss all of their physical presence, the way the world is right now, maybe it’s a blessing that these beautiful souls left when they did. They’ll never have to witness or endure all the ugly things that are happening right now on this planet. Where ever they’ve gone, surely it must be better than this place. I’ve been contemplating my own departure lately. I suppose it natural the older you get to think about one’s own death, or may its survivor’s guilt. Like why them?, not me kinda thing. Still, its pretty amazing to think I’ve reached 65 years of age, when a lot of medical people thought I wouldn’t last through my 40s. Though not sure if long life is a blessing or a curse when you’ve had severe breathing problems since birth.
Because of the recent wildfires and smoke, I haven’t had much opportunity to get outside and exercise, so I’ve been spending more time doing indoor hobbies, of which playing music is my favorite. That, plus planning for some much need home renovations later this year. All of these are good distractions from the reality of these crazy time.
*Actually when it comes to FB, it might be a good idea to assign a legacy person to your account, so that they’ll have access to it if you die. Otherwise, there’s no telling how long it might take for others to figure out that you’re gone for good.