This past weekend marks 28 weeks since I came down with my mild case of COVID with awful complications later. So about 26 weeks of the complications? We are in a half year now, kids. So again, to those who are always talking about high survival rate, bite me.
I have been doing better. The meds I am on, plus the desire to not get more clots, has caused me to change my diet and movement habits. My strength and stamina continue to build. I am starting to walk completely unaided, as in no cart and no railing touchpoint. A couple of weeks ago, I could do 3-5 minutes before having pain. Then a little over a week ago, I hit 11 minutes. The day before my latest checkup, I hit 15 minutes in one go. My Monday to Friday goals are to do as many bursts as I can for as long as I can for at least a cumulative of 15 minutes a day. I am also alternating feet on steps going both up and down about 75% of the time. It’s slow progress and I get frustrated a lot, because usually I am out hiking at this time of year. But I can only do what I can do.
The nice thing about my jobs is that I can do all of that indoor walking and climbing stairs and they actually encourage me to do so even off-hours. I am not ready for outdoor walking yet. I never know my stamina level at a given moment and can’t exactly just plop on a neighbor’s lawn for an hour when I need that break.
I have been good about taking my meds. I hate it, but I have been diligent. I am feeling better overall. So I was excited to go for my checkup last week.
Not such a good thing. I probably should not have planned it on my dad’s 10-year anniversary. Between that and my general anxiety over the visit, my blood pressure was through the roof again. So we are adding another medication. Being on a diuretic has had some less than stellar side effects, including dry mouth and increased thirst. But because of my size and family history, we immediately had to jump to diabetes, of course. Never mind that my labs are always fine in that regard. It’s just a common assumption and it makes me mad.
[Side note, I did my labs immediately following the appointment and they were all absolutely fine, thank you very much.]
I had managed to take off and maintain keeping off 10 pounds. I was ecstatic because I have not been able to do that in years. [My female problems and associated meds are a huge contributor to this.] But of course, we had to talk about losing more and moving more. I kept emphasizing my progress and how it has been increasing more lately.
The scary part was the referrals for a CT scan and to a hematologist. Now, I admit that I had brought up the CT last visit. When I was in the hospital in December, it showed the PE from the COVID DVT, but also some dark spots likely from COVID. The hospital recommended the recheck. I haven’t had any difficulty breathing through all of this, but agree it is smart to get a recheck.
My biggest problem with getting a CT scan is my severe claustrophobia. In fact, they gave me a Xanax to get me through the one in the hospital. I know I don’t have to go all of the way into the tube, but it comes awfully close to the face when they are checking your chest. The one that was just for a kidney stone that didn’t go higher than my chest gave me a panic attack.
As for the hematologist, we need to know if the treatment thus far has been working or not. And we need to try to figure out if this is now going to be a lifelong issue or not. I mean, once you have had clots, you are at a greater risk for more. The question is will I require a daily medication for the rest of my life.
I think what also made me nervous with the hematologist is that he is based out of the cancer center. No one likes the Big C word associated with their medical stuff.
Again, piss off to the people who say this disease is no big deal because of the high survival rate. I may be dealing with this fallout for the rest of my life. And I have several friends who also now have permanent complications from this. That just never gets talked about.
So this was not a favorite visit at all. Like I said, I definitely should not have scheduled it for the same day, let alone the same week as Dad’s anniversary, because I was extra sensitive and moody all week. So I know we just were not meshing well, but I still like my DO. Now that I am a few days out, I am better able to focus on the progress that I have made and reframe some of the other stuff. It’s just exhausting to do so. But onward we go.
Until next time.