A very bad, terrible, beautiful day

It's been a long time, but it hasn't been long at all. In just a few of months, my old life seems so far away. There are still things I miss and things that frustrate me, but things are getting easier. It's hard to believe that one diagnosis, one single word, would be the catalyst for such a change. I don't feel like I turned over a new leaf. It's more like I'm on a whole new tree.

Today is my last day with Dana, my Certified Lymphedema Therapist (CLT), who has helped me learn how to take care of myself and my lymphedema. It is a bittersweet day. Meeting Dana was not the beginning of my story, but it was definitely the beginning of my turnaround. September 21, 2020 is my oldest daughter's birthday, but it was the day my world completely shifted. Dana has given me bad news, good news, education, guidance, and miles of support. I'm going to miss seeing her every week. But I was not happy to be with her that day...

Let's go back to the beginning. Back in June, I got a weird sore on the back of my left leg. It seemed kind of like a blister where the top layer of skin has been torn away and the raw lower layer of skin is exposed. And it leaked. It wasn't bleeding, but it was leaking a clear fluid. I put a band-aid on it and kept checking it every few days. It wasn't getting better. As it got bigger, another sore opened up a few inches higher up. As things were getting worse, my husband, Dan, was pretty adamant that I get to the doctor. 

So, Monday, July 20th, I went to see my doctor about increasing my antidepressants and figuring out what was up with these sores. It was weird and unsettling that I couldn't bring Dan with me like I usually do. But with the Covid-19 pandemic, no visitors were allowed in with patients. The med adjustment was fine. As for the weird sores, Dr. Wessels told me to cover them with gauze, she prescribed a diuretic for two weeks and told me to get ace bandages to wrap up my calves to see if that would help with the swelling. She told me to check back on Friday to let her know how it was going. She had the nurse, Megan, put a gauze bandage on the back of my left leg and wrap both my calves in ace bandages. When Megan put the bandages on, she did not pull them snug. By the time I got to the car, the wraps were both around my ankles. I sat in the car and took them off before I drove home. 

As soon as I got home, I opened up my Amazon account and ordered the bandages and gauze they had told me to order. I started taking the furosemide she had prescribed to reduce the swelling and tried to wrap my calves every day. That was a pointless endeavor. My calves are large. They have always been large, even when the rest of me was not large. There was barely enough bandage to wrap all the way up to the top of my calf and then the stupid things kept falling down. I tried three days in a row, with different strategies to try to get them to stay up. On Friday, I emailed Dr. Wessels to let her know that the wraps were not working and I couldn't tell that the furosemide was doing any good either. I never got a response. 

So, I went back to covering the sores with band-aids and doing what I do. I work for a call center, but due to the pandemic, I work from home. The most exercise I used to get was walking from the apartment to the car, the car to the office, my desk to the break room and then again, in reverse. Once I started working from home, it was bedroom, kitchen, living room, bathroom and that was it. 

On my lunch break, I would drive to Raising Cane's Chicken Fingers, or Runza, or stop for steak tacos from La Estrella. After work, Dan, Olivia, our 13-year-old, and I would load up in the car and head out for a drive thru to pick up dinner. We would take the food to a park and eat in the car just to get out of the house for while. 

The sores continued to worsen with the initial one starting to get deeper into my leg and a few started showing up on my right leg. I called to follow up with Dr. Wessels again and was told she was no longer with the clinic. It was going to be three or four weeks before I could get in to establish care with another doctor. So we started to schedule the appointment when the receptionist asked me why I was needing to see a doctor. After I explained what was going on, she said I needed to come in for one of their same day appointments and she got me in at nine that morning with a nurse practitioner.

Lisa looked at my legs and told me I had lymphedema. She said that she was going to refer me to the lymphedema clinic at Lawrence Memorial Hospital. Lisa also told me not to worry about establishing care with a new doctor "until after the lymphedema was taken care of." I left the office relieved. Now I knew what the problem was and that it was going to be resolved quickly and life could go back to normal. So I scheduled my appointment with LMH for the following Monday. 

Monday, we all got up early and went to our weekly breakfast at Perkins with our friend, DJ. We all headed out a little earlier than usual as my appointment was at 7:30am. I headed in to the appointment, alone again, but with high hopes that we would get things under control in a few weeks. Spoiler alert - I was WAY wrong.

Dana started with all the usual questions about medical and family history. When she asked who my primary care doctor was, I explained that I was told to wait until this was taken care of to establish care with a new provider. That's when she crashed my world with two, short, blunt sentences.

"The damage has been done," she said. "This will never go away."

Whoa! I looked at her in shock. This could not be right! Even with her mask on, I could tell that she was dead serious. She was not kidding, nor was she exaggerating. Then the tears started coming. I honestly don't remember much more that she told me that day. What I do remember, is that Dana told me I needed a low sodium diet and exercise and that too much caffeine was a bad thing. She said there were other things that she needed to tell me, but she would wait until my next appointment on Thursday, because she had already made me cry today. I asked if Dan could come with me next time and Dana said that would be fine. 

Over the course of the next hour and a half, Dana measured my legs for volume, performed manual massage to help flush out the lymphatic fluids, and wrapped my legs in layers of cotton, foam and stretchy bandages, topped with a knee high nylon sock. She told me I had to leave the bandages on until Thursday evening when I saw her again.

Dana wrapped my feet and I couldn't put my shoes back on, so she put another layer of material over my feet so I could get home without tearing up the bandages.

I carried my Birkenstocks to the car and threw them on the passenger seat. I got in, took off my glasses and my mask and just cried for a few minutes until I could get a little bit of control again. It was 9:14am when I called Dan. I could barely tell him what was going on because I was crying again. I had taken a vacation day, so at least I didn't have to work, but I couldn't stand the idea of sitting at home and sinking deeper into the darkness that was threatening to drag me down. So I told Dan I wanted to see if we could go hang out with DJ at The Dragon's Hoard. Dan was good with that.

When I got home, Dan brought my old pair of DC skate shoes because I figured those were the only ones loose enough to get my feet into. He opened my door and put my shoes on for me. Then he stood there and held me. After a while, we called DJ to make sure he wasn't busy and headed to the store.

I don't know if I told him what was going on over the phone, or once we got to the store, but either way,  he took it all in and suggested we play a nice easy game of Space Base to help me chill out a little. At the end of the game, as I was much calmer, DJ suggested Dark Seas, which is also fairly simple, but requires a little more thought. 

Now that I was calm and distracted, out of the blue, DJ says, "Here's what we're gonna do." And he proceeded to tell us that he and Anne, his wife, had been needing motivation to get healthier. He told us that he was going to talk to Anne and we were all going to work together to get more exercise and eat better. We would work together to plan meals and come up with healthy recipes and push each other to get moving. And thus, Team Eeka was created. Even though I knew this was going to be hard, with Team Eeka on my side, I knew I could cope with the changes and move forward. And that, is a beautiful thing.