Home Sweet Home

It’s been a while since I’ve posted. No excuses. I’ve been living my life and dealing with the further adventures of my health. I pulled away at first in response to receiving several calls and emails from people asking for medical advice. I wasn’t prepared for that. I’m back now, though, and hope to continue.

Meanwhile, earlier this month.

1217.14: Slept hard despite my body being trained to wake up once every hour for poking and prodding at the hospital the last three days. I have a Pulmonary Embolism, blood clots in my lungs. I’ll be on blood thinners for six months.

It’s nice to be home with the familiar sounds of my daughter singing around the house, Christmas candle smells, no blood pressure cuffs going off at regular intervals, no hospital food, Minecraft with hubby if I feel vertical enough (haven’t yet), and the other comforts of my own clothes and blankets around me.

Started taking antibiotics last night for my arm. Wrapped it in a turmeric poultice overnight which drew out some of the heat. It’s not near as red and the swelling has decreased. I use turmeric on occasion for a number of things and I am always pleased with it’s healing properties. I’ll be at the specialist for bloodwork to check my levels so I’ll have them look at it and go from there.

Walking to the bathroom winds me so I’m trying to have faith the blood thinners are working well enough; they are monitoring me every 2 days for now so that helps to ease our minds. Being home is a joy, but also a little scary as there’s no safety net.

We had a nice Christmas, despite everything, and I’m looking forward to the new year. The LE is still prevalent and making itself known through other issues, but I’m here and I’m not giving up.

Catching up.

Drawing is art therapy. Going up on Threadless soon.It’s been a little while since I’ve posted anything, and I know a lot of you have been wondering how I am doing. I was “diagnosed” with hiatal hernia week before last and needed to step away a bit. What is a hiatal hernia? Well, the best way I can describe it is that it feels like a charlie horse in your throat. Not something I want to go through again, ever.

I won’t apologize for not posting, but my plans are to post on a schedule (Mon/Wed/Fri) from now on. I many not say much, and simply posts links, or I may write a novella. It will depend on the day and how I’m feeling. My health and family come first. Also, I want and need for this blog to be as stress-free as possible.

As far as an update on my health, I’ll post as soon as all of the test results are back. I don’t want to post misinformation so I’m not going to theorize. My CT scan was moved to later this week, followed by an EGD once they have been given authorization (they are backed up). I’ve added a colonoscopy to the mix, due to the way I’ve been feeling since the attack, figuring to get it all done and wake me when it’s over. I’ve spoken to several people who’ve had the same, and they’ve said all at once is the way to go.

While well received, and fun to make, I’m going to revamp my snarky little cards. I’ve been giving them out to people who want to know more about LE, and haven’t been staring. I don’t know if I’ve been dismissing the staring and not giving it power, or if having the card has simply empowered me beyond the need to use it. Although, not having the balls to walk up to someone and hand it to them probably plays into it somewhere too.

A baby damselfly caught my attention while I was writing this post, its wings beating a purr on my dashboard. I let him out, but knew he’d brought a message to me. Damselfly is about change and breaking down illusions, kickstarting necessary changes that I’ve been avoiding or neglecting.

So with that in mind, welcome to a new week. I’ll see you again in a couple of days.

In retrospect.

In June of 2001, I met my best friend. She was small, practically pocket-sized, and kinda wrinkly. The first time I looked at her I was in love. She was already pretty spoiled when I met her; she’d had her own built-in swimming pool for months, music piped in daily with her very own soloist to accompany, and more sushi than she could eat.

At 8 months, something went wrong with her swimming area. The pool flooded so, with a little help, she was brought into the world one month early. Bright and beautiful. What we didn’t know then was that my lymphatic system had shut down.

In 2006, five years after my daughter was born, I found myself sitting in a salon in a barber’s chair talking to one of my then-clients, Brian Kuhn at Evolutions. I think hairdressers and bartenders must be kindred, it always seems so easy to talk to them. On this particular day, the subject of the swelling in my legs came up.

“You have Lymphedema.”

Brian did the one thing all of the doctors hadn’t: He listened and observed. One of Brian’s customers was an LMT who specialized in Lymphedema. He referred me to her, but I went to Shands first for confirmation since they were who my wellness exams had been through during my pregnancy outside of my midwife. They confirmed that, yes, I had Lymphedema. They wanted me in immediately for therapy two hours a day, seven days a week, but we weren’t in a position to a) afford the gas at an hour-and-a-half away, and b) I had a little girl that I couldn’t afford to drag around like that. I requested a referral to someone who was local and, ironically, they sent me back to the same person Brian had sent me to. I’d spent five years of my life going to doctor after doctor.┬áHomeopathic, Ayurvedic, traditional. All of them taking one look at me, deciding I was fat, and prescribing enough medication to choke a horse. Pills, drops, Lasix, Potassium. Exercise, exercise, exercise. One in Gainesville even put me on 80mg of Prednisone for five days, which is another story altogether. Needless to say, damage done.

By the time I found out what I had, I had pooled over 100 pounds of fluid.

I truly believe that everything happens for a reason. There are no coincidences. People are put in your path who are meant to be there, for however long, exactly at the right time. It is always all about connections. (Remember that, there will be a quiz later.)

With no insurance, I was limited to three times a week but those were God-sent days. She taught me what to do, how and when to do it. She taught me to wrap, and even taught Val how to do a basic form of the massage. Then the money ran out, those helping me had strapped themselves and I had to stop going to therapy. I felt I was ready, though, I was excited. After so many years of not knowing what was wrong, I felt I was up for the challenge. Freshly garnered hope in hand, I gathered my notes and steeled my will.

I wasn’t prepared for the depression.

With 100 pounds of fluid trapped in your body, everything is uncomfortable. Your legs are wide so you can’t judge distance very well and your balance is affected. Your nerve endings don’t work very well, so you won’t always feel injuries making your risk of infection double. It makes you a bit paranoid. And heat is not your friend. Living in Florida makes the latter problematic. I was adjusting to motherhood and a complete change in the way I lived on a daily basis. I went from teaching Ballroom, Latin, and bellydance to no exercise. I thought I was going to go stir crazy. I shut down.

I cannot exercise without compression so there was weight on top of that. Compression involves wrapping my legs, mummy-like, in several layers of compression foam (4, 8ft long) and short stretch bandages (4-5, 10ft long) plus gauze and other pieces of black foam for ‘molding’. Wrapping on your own, if you haven’t had therapy and a support system, can be debilitating.

By the time I was done with one leg, I was exhausted on all levels and had to rest. Second leg done. Twenty minutes to half an hour go by and the bandages are loose enough to slide off like a sock. So it is unwrap, reroll, rewrap. Lather, rinse, repeat. And I had to wear them 24/7 until I could compress down enough to occasionally wear compression stockings; which have to be replaced every six months.

After going through a severe depression for several months, I made the decision to stop wrapping. My daughter, in my mind, had become my only reason to get out of bed. I threw myself into my art, started a charity group, went public with my writer’s group, and moved forward. I dealt with the stares because of my size and the condition of my legs. I didn’t like what I saw on the outside. I needed to start back to therapy, but have no insurance and most would not cover what is considered alternative therapy despite its successes.┬áMy life was full of blessings, but I worried about leaving my daughter behind and wanted better for myself.

In the end, having my daughter has changed my life considerably but, discomfort and pain included, I would do it all over again to bring my best friend into this world. I feel like I’ve waited my whole life for her. The only thing I would change is find a medical professional who knew what they were talking about. That is why awareness and education are so incredibly important.

Courage.

The past two weeks have been the most hopeful in longer than I can remember. I started back to therapy through the kindness of, then, strangers and was asked to be a speaker for the launch of a new health group.

And I lost 14cm off my left leg.

Courage.

I have been debating about blogging my health for a while now. I attempted a SparkPeople page but, while a great resource, the site is geared more toward weight loss and I didn’t feel like I fit in there. Weight loss would certainly help my overall well-being, especially since my Type 2 Diabetes diagnosis, but my condition didn’t allow me to exercise without compression > which required therapy > which I didn’t have. I wasn’t holding back out of a lack of courage (well maybe a little) but I felt that I didn’t have anything positive to share with anyone.

Depression had been a normal part of my life for so long and in such subtle ways that most people didn’t even realize I was depressed. I knew that I was depressed, I’d always known, and that helped me cope with it. Anytime I wanted to just dive in and put it out into the world, though, it felt fake and I have never been wired like that. I pride myself in being straight up with people, and very much expect the same, so I couldn’t bring myself to pep talk anyone else when I was needing it more.

A great deal has changed since last year and in the last two weeks. I have my life back, along with all my newfound joys, and I feel more like myself again. Finding a support group of beautiful, empowered, incredibly stubborn women made all the difference.