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How I'm Accepting Lymphedema Into My Life

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I’m writing this at 11 p.m. because I’m not going to be able to sleep. Yes, I just had to literally crawl up the stairs to get to my bedroom, stopping multiple times to cry from both physical and emotional pain. Yes, last month, I was walking up the stairs with minimal problems – swollen legs and a clumsy body, but my body and I were getting along quite well.

See, my body likes to switch things up on me a lot. It has me thinking I’m “normal” sometimes and I can do everything anyone else can, except running (that always messes me up). Then sometimes, I’m barely able to walk without shooting pain and my ankles are four times their ideal size.

This is the life of having a chronic illness that fluctuates. When you’re better, you think you’re suddenly “normal.” When you’re bad, you think you’ll never feel OK again.

Ever since I was 5 years old, I’ve had this thing called “lymphedema” happening to my body. As a kid, it was in my stomach, thigh and groin area. It caused it to be really painful and swollen and nobody knew why it was happening. Normally, this disease happens due to cancer treatments or you’re born with it. But mine just decided to happen, in a really odd place with really odd symptoms.

Many different doctors performed different tests on me for medical and research purposes. Nobody could figure out what was going on. Little 5-year-old me already had a bunch of problems – being partially deaf in both ears, needing speech therapy, having undiagnosed autism, and now this. Doctors were convinced it was lymphoma. To this day, we don’t really know if it was at the time. But I got multiple surgeries and biopsies to get rid of the masses.

After a month or so though, they’d reappear and id be swollen again. Then, they tried getting rid of the extra fluid by surgically implanting a tube and bag into my leg to drain the fluids. I had that in for a few months and couldn’t leave the couch. It seemed to work though and that area of my body has been good ever since with the help of many compression garments over the years.

But then, five years ago, I noticed my ankles were swollen and thought it could be sprains so we went to the doctors. After months of appointments, I found out it was the lymphedema again, but in my legs. My doctor said surgery wouldn’t work on this, MRIs showed that the veins in my legs look and work like spaghetti – so basically, very, very poorly. They said there was no cure and to just try to compress my legs and minimize exercise.

I didn’t take it too seriously at the time, being a young teenager and all. I tried to keep doing sports but was too much in pain and out of breath to achieve anything with them. My ankles kept getting worse and nothing helped. My ankles are still like that today. Sometimes the swelling goes down a bit and sometimes it gets really bad.

This summer, I overworked my body and felt and saw the consequences. Barely able to walk, crying in pain, embarrassment, frustration, massively swollen ankles. All because I just wanted to put my full effort in at my job. After a week or so though, they stayed swollen but stopped hurting. I kept living like I didn’t have a chronic illness and just wanted to be “normal.” My biggest problem is thinking that when I have good health days they’ll last forever, so I do more than my body can handle.

Since this summer though, I’ve been doing really good. Getting my autism diagnosis and learning I can only handle so much without getting drained and overloaded, I stopped overworking myself so much. It’s definitely helped with my legs as well. But this week, my ankle kept getting more swollen – for no reason. I’ve been in horrible pain. Rushed to the ER for possible blood clot or blood infection causing it – neither were conclusive. I got blood tests and an ultrasound – nothing out of the blue for me. No one can figure out why it’s so painful and getting so bad.

My specialized doctor had one thing to say: “We informed you this could happen, your condition may get worse for no reason. Have you considered the wheelchair option we discussed?” My mind immediately said no. I don’t want to be in a chair. I work with disabled people for a living – how will I care for them if I’m in one myself? I can walk, so I don’t need one. But then, I realized how much I’ve been sobbing in pain. How I can walk but that doesn’t mean I should. How I can use my legs but the more I’ve been using them the worse they’ve been getting.

So, I decided for my health and my body: I am going to get a wheelchair. But it’s not a full-time thing. It’s for me to use on long distances or times where I’ll be walking a lot. Like going around the city with friends or going to a large grocery store. It’s to use on my bad days and weeks where walking hurts more than I could ever imagine. And on my good days, I won’t have to use it. That doesn’t mean I don’t need it, it just means I have a illness that fluctuates and changes. So sometimes I’m OK and sometimes I’m not. And that’s OK.

I know it’s going to be a hard adjustment, and man, am I scared. I’m nervous for the remarks from people who have seen me walk fine for years but never saw the limping, the tears and the breakdowns on the painful days, the falling into everything, what my leg looks like under my clothes on the worst days and how on the worst days, my shoes don’t even fit (even when I have to buy them three sizes too big).

But that doesn’t matter. Because this is for my health and my well-being. Not anyone else’s. Having a chronic illness is weird, taxing, painful and frustrating. But it’s also helped me learn to see the positives, to care less about others’ assumptions of me and be more focused on my self-care.

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Photo via betajulia on Getty Images

Originally published: January 8, 2018
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