Who can answer my questions?

I suspect the answer is “It Depends” which is not very helpful. But it’s stressful not to have someone I can easily sit down with to just explain what it means to be morbidly obese with lipedema, lymphedema, lumbar radiculopathy, and meralgia paresthetica. I know what they are individually, and that they are interrelated. The spine/nerve parts are separate from the lipo/lympho parts, and the obesity makes things more difficult to distinguish what swellings and lumps are from fat or the lipo/lympho diagnoses. Oh, and let’s not forget the blood clots which are in the same leg. More complications.

But who can tell me what’s going on when I look at my swollen right foot? I can’t move the ankle much, but then, I haven’t been able to do that for 2 years. The skin is stretched and feels as though someone scraped a layer off. There are 3-4 rippled extra swollen spots along the outside of the foot, and the ankle is huge. Is that Lipedema? Lymphedema? What do I do about it? Do I continue using my tight custom compression garments that aren’t bothering my left leg at all? Do I use Amazon-type compression socks? Do I shove my foot into my most stretchy shoe or slip it into a soft gripper sock or leave it bare and call it a day?

My next appointment with the Vascular people is July 3rd, and that was hard to get. The PA I’ve been working with is on maternity leave and I don’t know anyone else there to ask – and getting there even if I could find an appointment isn’t all that easy. My PCP’s office isn’t all that easy to manage in a chair, though getting an appointment is a lot simpler. The Certified Lymphedema Therapist said to give my skin a rest and not use compression for 2 days. But is it going to still hurt after that? Is that normal? And is the pain from the lipo or the lympho – or is it still nerve pain problems from the radiculopathy?

I don’t know who is in charge of this except me, and my medical degree is from www.mayoclinic.org. I wonder if I can take an online course to help me do this better.

Actually it’s lipedema

I thought I had lymphedema and have been busy researching that. Today I discovered what I really have is lipedema which has caused lymphedema. Great, it’s a two for one. Although I was blaming myself and my morbid obesity for the lipedema, my therapist assured me that the cause was female hormones, not weight. In fact up to 11% of women will be affected by lipedema.

So what is it?

Lipedema is a condition that causes excess fat to accumulate in the lower part of the body. Lipedema most often involves the buttocks, thighs and calves. The upper arms can also be affected. The condition does not affect the hands or feet.

https://my.clevelandclinic.org/health/diseases/17175-lipedema

As the fat accumulates, it can block the lymphatic pathway. This causes a build-up of fluid called lymph. The condition is known as secondary lymphedema or lipo-lymphedema. That’s what I have. Yayyy me. And with the combo, my body is retaining lots of fluid that I can’t get rid of with diuretics, because what I’m retaining isn’t water.

That’s all I need, right? Fat accumulating in the areas that are already fat. But it actually makes a lot of sense when I think of how my body is behaving. My right leg has been swollen and thick for a long time, and recently I’ve noticed how very lumpy and uneven my thighs, butt, and saddlebags have become. The problem is that those large lumpy places won’t get smaller without liposuction, which isn’t an option for me, so the goal is to keep them from getting bigger.

And how do we do that? I’m starting with these special expensive compression garments instead of wrapping or massage. The therapist explained that this particular kind of compression does the same thing as wrapping and massage, but it actually is better because you wear them all day. Using the sleeves and pump to reduce the lymphatic edema will help some, but those are on hold until the blood clots in the leg no longer preclude their use. I see the vascular people in 2 weeks so should know more soon.

Wearing these custom compression things is no picnic. No, that’s not quite true. Getting them ON is the real problem. I managed to get the left one on and it felt surprisingly good all day. The right foot, though, did not cooperate; it usually doesn’t. I have two sock aids, one flexible with terrycloth and the other, smooth plastic, and I use both for my Amazon compression stockings. But they didn’t work as well with the new things, or maybe it was just that my foot didn’t behave enough to get the stocking over the foot and around the heel. The therapist put it on for me while the back of the leg screamed in pain, which I was not expecting. Both new pieces have a 1 inch silicon belt around the top to keep them in place without digging in, which also hurts a lot.

He was very straight with me that I’m going to have to make this work without someone here to help or do it for me. But he and the other therapist will help me figure it out. I have all the tools – compression things, donning gloves with grippers, 2 different sock aids, and a green “easy slide application aid” which appears dubious to me.

I’ve learned how to do a lot of things in the last 2 years, things that I thought were impossible. I know that the compression knee-hi’s will go on because I wore them for 7 hours today. It will take trial and error but I’ll figure it out. My foot is still super puffy with lymph fluid that drained down and will need to be moved out with massage, but the foot doesn’t have lipedema, it’s lymphedema.

It’s complicated. But I’m starting to understand it. Now if I can just figure out how my nerve-damaged leg will work with the other parts, I’ll be in good shape. Or at least better shape.

Depressed with too many things

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.

Look what’s finally here!

My shiny red power chair arrived this morning. I got a call out of the blue asking me what time they could deliver it, which was how I knew that the process was successful after 4+ months of paperwork and phone calls. It was denied by insurance the first time, and the appeal was also denied until my doctor sent a few extra things, and then bam! It arrived. It needs a name but I have time to come up with one.

It’s beautiful and I don’t know it works yet. I do know that the seat turns 90 degrees so I can climb into it – except it’s really high for me so I couldn’t sit all the way back in the chair. And I also couldn’t get my right leg up on the footrest. I lurched around in little bursts of power trying to figure out where I had room for both the power chair and Phoebe, the manual chair, so I could get on and also have a reasonable chance of returning to the same place.

Once on the chair, I headed off to the hallway to take an inaugural ride down to the lobby and ride around a bit. Except I couldn’t figure out how to close the door to my apartment, which is quite important since the kitties would really love to come with me. Anywhere. My neighbor closed it this time, but I’m definitely going to need to figure this one out – both when I leave and when I come back. I’m smart, I can do it. I just need to … figure it out.

I really really need to find out how to lower the chair height. The delivery guy didn’t have me get on the thing when it was delivered which obviously was the time to get it figured out except I didn’t do it. According to the owner’s manual, this chair is supposed to have an elevating seat which should let me reach high places, but I’m not trying that until I know how to make it do more basic things.

But the good news – the great news – is that the chair is finally here. Once I can motor around easily, it will be a life changer. Until then, watch out so I don’t run over you. Trust me, it could happen.

Another day, another issue

You can never have enough different things going on in your body. At least this has been how it works for me.

Today I was diagnosed with lipo-lymphedema, which explains a lot about sore swollen lumpy places on my right leg and thigh, my hips, and probably other places as well.

What does it mean? The Lymphedema part refers to tissue swelling caused by an accumulation of fluid that’s usually drained through the body’s lymphatic system. The Lipo part is Lipedema, an abnormal build-up of fat in your legs and elsewhere when fat cells invade the lymph nodes and grow. Those areas are sore, unlike regular fat cells, and once they’ve invaded, they don’t leave.

I’m glad there is a way to manage this even if it can’t be reversed. I already wear compression socks, which I hate but need every day. The therapist here this morning will be back at the end of the week after talking to the vascular folks and insurance about coverage for leg sleeves and a pump. Some of you already use these so I’m hoping they’ll work for me as well.

In the immortal words of Gilda Radner’s Roseanne Roseannadanna:  “It just goes to show you, it’s always something — if it ain’t one thing, it’s another.”