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.

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.

Reclusive, depressed, or sick?

Nope, just SAD. I finally figured it out and ordered a light therapy lamp. I had one when I lived in New England and I know it will help. I wrote most of this post before I figured it out, though 🙂 Symptoms of Seasonal Affective Disorder (SAD) include everything I’ve been feeling for the last 6 weeks …

Since coming home from the hospital, I’ve spent a lot of time alone in the apartment. Well, alone with the cats and the TV. I’m not really interested in hanging around people and being social. My friends here are lovely and I enjoy their company – but not now. Since the retina tear, I’ve also been basically sitting around because I’m not supposed to do anything strenuous and to avoid having my head down. The quiet time alone feels like vacation.

I’m not sitting around moping or feeling sorry for myself. I dose off in the chair frequently and am really tired all the time even though I’m getting lots of good sleep at night. But I have that deep chest cough and facial pain, which usually means a sinus infection. I’ve had both for weeks. Am I depressed? Maybe. Actually, I know I am and I’m already on an anti-depressant which has helped enormously.

My shoulders hurt just being attached to my body. After propelling myself around on mostly carpeted hallways, my arms are tired and the shoulders hurt more, and my legs are often throbbing from being down for hours instead of elevated in my lift chair. But mostly it’s the idea of having to get myself back home after being out for something like working on the community puzzle in the library or going to Bingo or exercise class that tires me out before I even go.

I don’t feel lazy staying at home. It’s really just taking care of myself. I can sometimes find someone who can help me push my way home again – but so many people use walkers or scooters and can’t actually do much to help. So it’s up to me. I’m more than ready for the power chair.

And that chair will let me get outside in the sunshine much more easily than I can do now. I can’t wait.

I can take the truth a year later

Last year on this date I moved from the Olympic Center to Meadow Lake Skilled Nursing for another 6.5 weeks of rehab before going home. I cried when they left me in my room. I pushed so hard those first three weeks after surgery and gained back the ability to stand up and walk very limited distances.

But that was really big. On my first day with her, I asked my Olympic Center physical therapist what was actually wrong with me. Doctors use big words and I didn’t really understand why I couldn’t stand up or make my legs work, and I knew that nurses and PT’s often tell you the truth in words you can understand.

Veronica told me that I was an Incomplete Parapalegic. That sounded really bad. But it also was very clear. “Incomplete” here means that I still have some motor and sensory function, which are Good Things.

Here’s the problem – a lumbar laminectomy (my surgery) cannot reverse the damage of spinal stenosis, which was going on in the lower leg for years. The nerves got more and more compressed which is why I started to lose sensation and movement in the right leg. When I finally had the surgery, it was two years after the stenosis was originally diagnosed, and it was already severe at that early point. I was falling a lot, but I was still able to walk around without assistance. We had every expectation that I would come out of the surgery with that same level of functioning.

But that’s not what happened. My legs collapsed under me two weeks before my scheduled surgery, and even though I had the same operation as originally planned, my functional ability was not the same as it had been before. I came out of it with uncooperative legs, not because of the surgery but because of the damage already done before I had it.

I’m not going to be able to give up a wheelchair and just walk around with a walker for long distances. And I’m not giving up to say that – I’m being realistic. And it’s okay. I can do this.

I talked with my current physical therapist this week about looking into power chairs as another mobility option for me, especially for longer distances here, because my shoulder keeps being inflammed from all the rolling I do. And instead of trying to disuade me, she agreed that it would be a good tool. She wouldn’t have said that if she didn’t believe it, and she wouldn’t have said it a year ago. Medicare already bought me a chair and they only cover one chair every five years, so a power chair would be completely self-pay. But it could be a really nice Christmas present to myself, don’t you think?

It’s Been Quite a Year

I never dreamed of a year like this one when I was planning for retirement. I left Yale Law Library in October 2015 and within a week, left for Texas. Not long after I got here, I found myself redesigning the community church website and then working there for five years. Last August I left that job when I realized I needed all my time to concentrate on learning to walk and live independently. I was right that it would be a full time job, but it’s certainly not what I expected to be doing when I wasn’t getting a paycheck.

I had spine surgery a year ago today that arrested the severe spinal stenosis, but it didn’t reverse the damage that had been done. I was very scared of what the future would look like when I was in rehab and not able to even stand up or go to the bathroom without two people helping me. I didn’t think I would be able to go back to my brand new apartment or take care of my beautiful floofy kitties that I loved so much. I didn’t see any light in the tunnel at all much less a way to get out of the tunnel to something beyond that.

I learned that I need to do what I can for myself but also recognize when I need help and ask for it – and then accept the help that is offered. I’m stubborn and independent and am used to living on my own, without anyone to depend on to help with things around the house. I’m still alone but there are people right out my door who will come if I ask, who will notice if I don’t show up for things. There are sweet friends who took care of my kitties when I was gone for so very long. That I can hire people to help me with personal care but also therapists who can teach me how to do some of those things for myself. The day I was able to do a shower on my own was a great day indeed even if it took me an hour.

And I learned that I wasn’t limited to hoping I could stand up. I can walk again, thanks to my wonderful physical therapists Veronica and Grace. Oh, I’m still using a regular walker with its cheetah print tennis balls but have a bright red rollator ready when I have the balance and strength to work on using it. It should be an enormous help since I’ll have a place to carry things from place to place (which is hard to do in a wheelchair) as well as sit when I need a rest. I can walk about 3/4 of my hallway and back again without stopping, and am working up to doing the entire hallway soon.

But the reality is that I probably will not be able to ditch the wheelchair or walker. There is a lot of nerve damage from the stenosis that won’t reverse. I’m not as worried about it as other people seem to be, probably because I’ve been in the chair for a year now and know what I can do. Caring for the cats – food, water, litter, cleaning up vomit – is best done while seated, and while I might be able to do that with a rollator, I know I can do it from the chair. I love them dearly and need to be sure they’re not shortchanged by my limits.

I’m so grateful for my friends here at Meadow Lake and for its accessibility and spaciousness. I couldn’t have dreamed up a better place to be with my physical limits. And I’m especially thankful for the friends I visit with online and by phone if not in person, who keep me connected, interested, and engaged. You are my tribe and I love you.

Out on my own

I finished formal out patient PT on June 3rd. I’m sure I’ll be back, especially when it’s time to transfer over to a rollator, which isn’t as easy to use as you’d think after hanging on to using a folding walker for almost a year. But after 10 months of therapy, it’s oh so nice to not have to be somewhere at a set time three days a week to do things that I can mostly do on my own.

I use the NuStep 4-5 times a week for 30 minutes and am up to level 5 on resistance. It still takes a while to get on the machine but I can get off in under 3 minutes. I’m also using my weight bars to do arm exercises every day. I’m using a 2-lb bar which doesn’t seem like much until I do 3 sets of 20 of whatever it is and everything burns. I need to be doing standing leg exercises at the kitchen sink, which I will do when I finish this post.

Walking is a bit of a challenge. The person I hired to walk with me isn’t working out that well because of schedules, since she already works for a bunch of other people. I’m spending half a day walking around in the apartment using the walker, trying not to run into cats who are fascinated by Mommy standing up. I don’t want to not be walking in the hall but don’t really have anyone to do it with me, trailing behind with a wheelchair.

Frankly, I know I’m not going to fall. I know what that feels like and all I’ve felt when doing hall walking has been the need to sit down if I walk too far. So I’m thinking about going out in the hall by myself and walking up one apartment, turning around, and going back again. And then doing that several times during the day. If I’m tired, I can stand and rest, but these are short well marked distances and I do not think it’s going to be a problem. I might be stupid here, but I don’t think so. I know what I can do and what my limits are. And if I can go when I’m ready, I don’t need to plan it around someone else’s schedule.

I’m not really expecting to get much better. I could be wrong. But my research tells me that surgery doesn’t reverse severe spinal stenosis; the damage is already done. At least the surgery will stop me from getting worse. And if what I have now is what I’m going to have, well, I can deal with it. Whenever I’ve been challenged and had to add new daily living functions, I’ve been able to rise to the challenge and get it done. Things like laundry, bed changing, and showers. Yayyy for showers! I’m sure there are other things out there to add, or maybe it’s just getting more comfortable and confident with the things I can already do.

My home-health therapist told me at the end of March that I should be prepared to find myself in exactly the same functional place in 6 months as I was then. Nerves grow when and how they want; people don’t really know what to expect from them. I don’t think I’ve gained much since then except getting back to walking after a rough back pain patch. My out-patient therapist told me that my body remembered how to walk (which is an improvement, because 10 months ago it didn’t know anything) so it will be easier for me to get back to movement.

No matter what, I stand up a lot. I’m in the kitchen doing dishes, cooking, fixing meals, getting food for the cats. I’m in the bathroom brushing my teeth, and standing in the bedroom to make my bed and get dressed. I do three-point turns from the wheelchair to the lift chair or the NuStep. I stand up to do laundry. All of these weight-bearing activities help keep the muscles strong and stop them from atrophying. I will NOT stop doing them, whether I’m walking in the hall or not. They have become normal, which is itself amazing. I don’t take them for granted, not after this past year.