And now we wait

This morning I had a CT Angiogram Abdomen Pelvis w/Long Leg Runoff w/Contrast, which is a lot of words that mean CT Scan of abdomen and legs using contrast. This is supposed to tell us what’s going on in the upper right thigh with its “pulsilating flow” that it shouldn’t have.

Results just posted on MyChart and I read through them several times. I have no real idea what they mean in regards to the thigh, which was the whole point of the test. I did read that I have diverticulosis of the sigmoid colon, which I already knew, and that the benign spherical mass in the right kidney has grown a bit. A follow up MRI is recommended. Hmmmm.

But no real answers in what I could see to the thigh. I have to wait to hear from the doctor for that. No telling when that will be. And if they messed up somehow and I have to go back to get the venous phase done, which was supposed to be done today, I will be more annoyed. So I don’t know if this was worthwhile at all.

More when I hear back from the doctor.

Why so many things?

Sometimes I wonder why my body is causing me so much trouble. The quick answer that a doctor will tell me is that it’s because I’m morbidly obese. To medical people, everything that goes wrong with a fat person’s body is because of the fat.

Most of the time, though, I think about what and not why. I can only face one thing at a time and try to be pragmatic with a good sense of humor. Being angry or weepy doesn’t fix anything even if it does release some pent up stress. I research new problems thoroughly on Dr. Google, focusing on the Mayo Clinic website but also reading articles in PubMed or other scholarly resources as long as I don’t have to look up every other word. I walk through the tests and problems knowing that God is with me, and that sometimes the answer to “Help” is just that: to be with me, not to fix things. I accept that “No” is an answer.

I also realized soon after everything crashed for me in 2021 that God may not be trying to teach ME a lesson through these difficult things, but to use me to reach others. I try to be straightforward and honest about what is happening with my body here on the blog, and I also know that people watch me rolling around in the chair. They see me have to take the long way around to go from points A to B because the easy way is too narrow, or know I just can’t go certain places because the space configuration doesn’t work or the bus chair lift is broken.

But they also see and read that I’m still doing things and don’t hibernate here in the apartment just because my legs don’t work right. I’m out eating in the dining room with friends, or wheeling into the library to work on our collaborative puzzles. I watch movies, do exercise classes, chair the Dining Committee, and am now about to take on the community newsletter. I bake cookies and dye my hair pink. Being differently abled doesn’t mean I sit around like a vegetable.

There a lot of things going on lately, though. My leg is still swollen and tight, with a puffy foot and hugely swollen right thigh. The ankle is bad and I have two blood clots. My shoulders and upper body hurt most of the time, and the wrists are also sore. I had a hospitalization and a retina tear. Oh, and Covid. Have I mentioned that I can no longer feel my right heel? And I’m also still morbidly obese.

Let’s be clear: I want to know what’s going on with my body, but that doesn’t necessarily mean I want to do anything to fix the problems. That depends on what and where they are. I don’t have a death wish, but I am not afraid of death or what comes after. I don’t know that any of my current problems put me on that path, but they are a wake up call to be sure that my affairs are all in order and organized so that my family can find what they need. No one organizes quite like a cataloger, so that one’s a sure thing.

Angiogram ahead

My latest leg ultrasound was done a week ago at the vascular doctors’ office. The tech spent a very long time looking at the top of my thigh, which hasn’t happened before and made me nervous. When it was over, the PA told me that the scan showed something called “pulsatile flow” at the top of thigh, up above the very long chronic thrombus. That means there’s a pulse of sorts, except veins aren’t supposed to do that. Arteries do, because the blood is pushed as the heart pumps. But it just flows back to the heart without pulsing. Except mine apparently does.

The ultrasound report, which I asked for, includes this statement: “AVM cannot be ruled out.” Okay, what does that mean? When I got home I looked up the big words one at a time and went down a rabbit hole of rising stress.

AVM is arteriovenous malformation or an abnormal connection between arteries and veins, In general, an AVM causes your tissue to enlarge because your arteries and veins expand and your affected tissue grows faster and larger than normal tissue. Which could explain the still swollen leg and foot and even more swollen upper right thigh, where they found this thing.

So if it an AVM, what then? Not sure because no one is talking about that. My primary care doctor said, “Don’t panic, I think it’s okay” which really was not all that reassuring. The good news is that this is in my leg and not my brain or my spine, but it’s in the leg that already has other problems, including two blood clots, swelling, frozen ankle, spasms, and neuropathy from toes to my knees. What’s one more thing at this point?

After back and forth between the hospital and the cardiology center, I’m scheduled for an angiogram with some other component to check the veins. I explained that I’m a hard stick and will take a while to get the IV started, which no one will pay attention to until they are experiencing the delay. Their description of the procedure and timing doesn’t match what I’ve read online, but let’s face it: not everything online is accurate. Maybe most of it is wrong or slanted. Maybe they’re discover that something completely different is going on, which will give me something else to research.

I don’t much trust medical people to tell me things. At least with this test done at the hospital, I’ll see the results quickly in MyChart instead of having to wait for another appointment to learn what they found – and what we do about it.

It’s all about the bathroom

Getting a power chair will give me more flexibility going to the common areas for activities more than once a day, which is what I’m doing now. But I’ve realized that my other big problem is having to come back to my apartment to use the bathroom. Since I take diuretics, I don’t even try to leave until a few hours after I take them, but being gone any length of time still means a bathroom break now and then.

Okay, this shouldn’t be a problem, right? We have public bathrooms on the first and second floors here with handicapped stalls, plus a single larger room that is marked as handicapped. There are problems with all of them. First, all have closers on the door making it very hard to open while also holding onto a walker or rolling a manual chair. That would require three hands and we only have two, so we either wait for someone to come by to open the door for us or ask someone to come with us to help.

The stalls themselves are not realistically sized even though they meet ADA requirements. I know I’m extra big and use a bigger than average size wheelchair. One of my tiny friends, using a borrowed small chair, found herself unable to shut the door of the handicapped stall AND get out of the chair and maneuver over to the toilet. This is enormously embarrassing since we go to the bathroom because we need to, ahem, go. Since I can’t get in by myself and have the same problem in a stall, I go home instead.

Places that have the single room with grab bars and room have the same problems. Oh, there’s usually room to roll around and get in position, but we sometimes still can’t get the door open on our own, and we’re grateful for the grab bars – but the toilets are so low! When your legs or knees don’t work right, you’re sitting in a hole trying to haul yourself up using the grab bar on one side. It’s not pretty and it’s hard.

So let’s talk about toilets. Standard height toilets are 14-15 inches high. ADA-standard toilets, also called “comfort height,” are 17-19 inches high. That’s much better but there are also extra-tall toilets which are about 21 inches high. That’s a lot of inches of difference and every inch of that matters to me. When I moved here, one of the two things I asked was replacing the toilets with new ones that were the tallest they could find. Little did I know what a huge difference that would make for me now. They’re a very comfortable height and my knees and legs are very happy and don’t feel like collapsing.

Another thing that makes it more workable is placement of the grab bars. When I moved in, there was a long horizontal bar in the shower, one vertical bar on the right side of the shower, and a horizontal bar next to the toilet. Great! I thought, that will be all I’ll need. But it’s not. When I came back from rehab, it was clear that the bar by the toilet was too short or just positioned wrong for me. Wheelchair users need grab bar space ahead of the actual seat to hold on and turn around. There wasn’t space to do that on the existing bar, so I had them install another vertical bar on the left side of the shower, almost making a 90 degree angle, and a grab bar next to the washing machine. Both have been invaluable. I find that when I stand up from the toilet, I reach up to the vertical bar rather than just the horizontal bar next to me. It helps me pull up and stay balanced.

Handicapped bathrooms or stalls don’t have that, another reason I prefer my own apartment. It just feels safer.

I’ve offered to buy a higher toilet for my building’s one handicapped bathroom. It wouldn’t make sense in a place with lots of children or if it were the only place to go, but in a senior living building with lots of people using mobility aids, I think it’s essential. Of course no one has taken me up on my offer, saying they’d have to also replace all the handicapped toilets in the stalled bathrooms at the same time, which doesn’t make sense to me. We have ONE handicapped bathroom. Let it work for those of us who need it.

Finally got Covid

I finally got Covid for the first time. Really the mystery has been how I avoided getting it in the past 3 years when everyone else I know has, some more than once. Let’s face it, I’m morbidly obese and have a compromised immune system, two of the risk factors for getting Covid. But I faithfully wore masks and self-isolated for much of the time.

I’ve been feeling crappy with what I believed was an extended sinus infection, and it may have been partly that since I had just finished a round of antibiotics that didn’t quite knock out the facial pain. But last week I was tired, stuffy nose, cough, and those weird bumps on my face, but not much else. I stayed mostly in the apartment for four days before it occurred to me to test for Covid. I suspect that I had it for days before that.

When I did test, I got it wrong and read it as Covid when it really wasn’t. A friend pointed it out to me and I felt like a moron, so I did it again and gave it enough time for the little screen to change. Yeah, it’s two bars for positive, one bar negative. Shows you this was my first time to test. I still feel like a moron.

The only other symptoms I developed was loss of smell and a lessened ability to taste. Staying quiet with the kitties gave me time to rest and sleep and get better, and I tested negative for real this morning, but I’m staying isolated because of the immune system.