I’m a librarian. We know how to research topics, evaluate sources, and distill information. This last week I’ve been researching lymphedema causes, treatments, and prognoses. Lymphedema is progressive and incurable, though it can be managed. I must say that it’s all pretty depressing, on top of already being depressed about my body and mobility limits. So today I’m not in a very good place.
It seems probable that my lymphedema is at least partly because of my obesity. While there have been thinner periods, I’ve mostly been morbidly obese for years. The fat can block the lymph system, making it not drain properly and resulting in swelling that doesn’t reduce with water pills, which I’ve been on for years for water retention. They’ve caused lots of peeing but not a whole lot of change in the leg, which usually gets better overnight when I’m level for hours.
Ten days after my spine surgery in August 2021, I noticed that my right foot was much heavier than the left one, which was much easier to pick up when I tried to walk. It was as though someone wrapped weights around my right ankle and expected the leg to operate as usual. It didn’t and it hasn’t since then.
Last summer I complained about my continued leg swelling, tightness, and heaviness only to be sent for an ultrasound that found the blood clot. Well, the first one. Things got a little better when they put me on blood thinners, but it’s been almost a year and the clot not only hasn’t dissolved, there are now two of them and the Vascular people tell me they probably won’t dissolve after all. Grrrrrr. I don’t completely understand why they can’t do anything about them except monitor but will bring it up again at my June visit.
A certified lymphedema therapist did my lymphedema evaluation and shortly after I was measured for custom compression “garments” at the cost of $240/leg. They’re lined with something non-slip so they’ll stay in place for many hours. I apparently need “donning gloves” to put them on, so they’re on order with Amazon, as well as a wide rigid sock aid. My regular aid is covered in terrycloth, which would stick to the inside of the new garments, so I can’t use them.
I watched a YouTube video to make sure I knew how to put these bloody things on, but they only showed a person without leg and foot issues casually slipping the socks over the toes, you know, the way normal people do. My feet don’t work like that, which is why I need the sock aid. Let me see, green slippery thing over the leg, compression thing over the sock aid, slide the foot into the aid and gradually pull the handles to slide the aid back out over the heel, bringing the sock with it. Then use the special gloves to pull the sock up to its correct position. The next issue is how I get them off, but I think I have a plan using the end of my reacher tool.
I think my leg is going to look and feel like I’m in a straight jacket. I may also need to have a pair of these things that are thigh high, given where some of the lumpy places are. I’m guessing those will be $750/pair. Ugh.
There are Facebook groups on millions of topics. I joined one on Lymphedema and am already on one for Spinal Cord Injury. It’s amazing what great resources they are for learning about conditions, treatments, tools, as well as support and motivation. That’s where I learned how to take off the compression socks, and have seen pics of legs wrapped up in sleeves to use with a pump. I can’t have that yet because of the clots. Another thing of interest to me is a vibration plate. It seems that everyone is talking about it and I’d never heard of it! Again, I think that’s off limits for now because of the clot, but I plan to bring both up with my next appointment at the Vascular place.
I strained my left knee last week doing a twisting pivot turn transfer to the wheelchair in the bathroom. Oops. It’s still warm/inflamed, so it’s getting ice a few times a day, and I’m mostly just sitting in the lift chair with my legs up as much of the time as I can. So – sort left knee, sore shoulders/delts, sore right wrist, lower back pain from right and left SI joints, super tight muscles in the legs, and my screwed up swollen right leg and foot.
When I think about all the things, I want to just cry except that won’t fix anything. I’m not sure what’s wrong can be fixed at all, and know that some of it can’t. I need to lose weight but it’s wicked hard when you’re in a chair and not moving a whole lot. I can get back on the NuStep in a few days but that doesn’t last as long as all the extra steps I was getting 2 years ago. I have to remember to love myself where I am, knowing that God already does.