Not talking to myself.

It’s been a while since I’ve posted, life sideswiping me in its typical fashion. The day-to-day is like a broom sometimes, sweeping me along until I think to put a foot down to stop it. The foot, in this case, was someone else’s. I was contacted by someone on Facebook and reminded why I started this blog. I got the chance to talk to her and, such kind words, it was like the first time someone ever told me they were a “fan” of my work. It’s humbling.

That one email also served as a reminder that I’m not alone and that I make a difference.

Living Life

I’ve not wrapped in over a year, my last therapy sessions ending abruptly after only a few weeks. I continued wrapping for about 3 months on my own afterwards before the depression and exhaustion took hold. Not the kind of tired that a quick nap will fend off, but the overwhelming worn out that comes from wrapping and rewrapping multiple times every day. It can be debilitating if you let it take hold, so I stopped to regroup and live my life. The cost is losing ground on progress, though, so it is a trade off: Stay sane and off balance physically in order to research other options, or continue with risk of further physical damage and crawl into a dark hole. The latter isn’t really an option.

The Not-Tos

I have help when I wrap. My daughter helps me reroll bandages and my husband Val, bless him, helps me hold my leg aloft while I wrap. I have a hernia from my c-section, confirmed by a previous therapist last year, and have been instructed not-to-lift, not-to-bend, which leads to not-to-function. I was told not-to do dishes and not-to vacuum as well and my husband is the most understanding guy in the world. I can’t live my life like that, though, not being able to do ANYthing. I’m fairly independent, stubbornly so. I have no problem asking for help when I need it, I know my limits, but I cannot reconcile myself with the idea of putting my husband to work doing everything around the house after he gets home from his regular job. I’m not the sit-and-eat-bon-bons-all-day kind of girl, so I have had to come up with alternatives to my lack of therapy.
 

Sold for a good cause

Cravings

Giving up coffee and soda, my legs went down to half the size they were (which is huge) and became more pliable within a week. I have to force myself to drink water, easier some days than others, and it is the only thing I order when we are out aside from a sweet tea once in a while – which is probably just as bad, but I’ll pick my battles. I’m not perfect, I slip up sometimes, but the physical difference is apparent almost immediately.

I had thought that discontinuing the coffee would be the hardest, but I was wrong. The craving for that occasional soda is a lot worse. I can stave off the craving by having a sip of my husband’s if he gets one, which is better than drinking a whole one myself, or by drinking water, but the latter doesn’t always work. I’ll give myself infrequent coffee as a treat, but double up on my water intake. I’m weening myself off it successfully now and there is no guilt, I refuse to give in to it. It is what it is and I am making it happen in the way that works for me.

Growing up, somewhere in my 20s, I remember my ankles swelling. I camped almost every weekend with a medieval reenactment group and soda (especially Mountain Dew) was prolific with the other campers. I don’t remember what kind of soda we packed, it has been more than 12 years since I have been able to camp, but I remember somewhere along the line that my ankles would swell. If I’d had more than one, my ankles would get noticeably bigger (I hate the term “cankles”) and a friend would always tell me to stop drinking soda. He worked as an EMT in another county, but never mentioned LE. I backed off of it a little and started packing raspberry sweet tea in cans. The ankles stopped swelling, but the soda was always in reach so it was hard to avoid and a little ankle swelling got rationalized into a mixture of excuses – too hot out, walking in sand, too much standing, just get your feet up. Eventually I stopped drinking soda because I liked the tea and I put my feet up all the time. After that nothing noticeable happened until my pregnancy years later.

Sharing

I am going to try to get on a schedule this end, posting at least weekly now that I know someone is actually seeing this. I’m feeling renewed and I’m hoping to incorporate a bit of artfulness into this space as well. If you have resources, please share them and I will add them to the page. I’m working on some freebies for download as well.

Till then, thank you for being here and hang in there, it means a lot.

Angel.

Oddly enough, I had started writing a post earlier today about how things were going here lately – getting off track, getting back on track, rearranging my workspace to accommodate my health – but it all seems pretty trivial right now. I just got a phone call from a friend.

We lost an angel here today.

Eternal rest grant unto her, O Lord, and let perpetual light shine upon her. May the souls of the faithful departed, through the mercy of God, rest in peace. Amen.

My friend Rose lost her battle with cancer today. She was. is. an amazing woman. I have no doubt she was in Heaven on the exhale and has spent the day up there rearranging the furniture in the lobby for St. Peter. Rose inspired so many people during her time here, and continues to. Her and her husband Chuck both. Rose was a powerhouse and I have no doubt she still is.

The reason I say here is that I know she is at peace with God now. She isn’t gone. She’s watching over everyone she loved and I know that her kind of love easily spans the distance from there to here and back. I feel blessed to have had the time with her that I did, her impact in my life far-reaching. Rose was the one who helped me get back into lymphatic therapy, however brief, and set my mind on a different path. She made amazing Hootycreek cookies (which she got me hooked on, thanks) and could sideswipe you at cards with an impish chuckle before you knew what hit you. Her smile spoke a feisty passion for life that was infectious and I loved seeing it. I’ll miss it.

My husband Val, my daughter, and I have some very fond memories of her, and I know she won’t be forgotten. Far from it.

Ironically, today is International Women’s Day. I love you Rose. Yes, I know, I’ll go wrap.

Bouncing back.

We all had a run at the stomach flu recently that was going around, my daughter came in first place with a hospital visit and eight hours of vomiting. Having fallen off the truck, I haven’t wrapped in almost two weeks. I have been so wiped, I haven’t had the energy to do it, and I have been so busy that I haven’t been able to get off my legs long enough to get them down for wrapping.

So, in honor of my need to get back on track, today is “Stay Off Your Legs and Barricade Yourself in Your House Day”. I think we all need one of those occasionally, especially moms. The key is no guilt.

Past is, well, past. Holding guilt in your body over something that has already happened serves nothing but to make you ill. It’s done. You can’t change it. Better to focus on what you can do and pour your energy and self into that. Let yourself off the hook and keep moving forward.

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New inspirations.

For now, I am dreaming of breakfast in bed and a morning of looking at art magazines while my legs are up. I’l tackle the rest of the world, and my legs, a little later and move forward.

Hang in there!

Hope.

I am very blessed to have the support group that I have. To know, when I wake in the morning, that I have people around me that love and care for me, is a tremendous gift. I haven’t always had that and I wonder how those tho deal with LE on a daily basis cope without one. My husband, Val, and my daughter Ysa make for an incredible pep squad and I could not get through the daily part of things without them. In the last month, I have I have both started and stopped therapy, lost 33 pounds, and have become more self-reliant with my therapy. The therapist that I had briefly helped me to slowly regain my footing, allowing me to get my head back in a place where it needed to be.

Having and then losing therapy due to finances five years ago was devastating to me on every level. I knew that starting over was going to be tough and that I was at a place where I was going to have to have therapy (MLD) before I could do it myself. My disability case is on hold till I could get on a judge’s docket, possibly till December, and I couldn’t wait. I was led through two different people to someone who offered MLD and CDT, and the next few weeks were wonderful. It was only for three weeks, but it had served its purpose and losing therapy was a good thing. I needed to be more self-reliant in my therapy and no one could wrap as well as I could wrap myself, a lesson learned from my original therapist years ago.

I knew it wouldn’t be an overnight thing, but the strides that have made have been incredible. I have cleared my plate, removing potentially stressful things from my life, and I am focusing on Art for Cures and my own projects for a change. I have been able to face my fears and turn my head around regarding therapy and what I needed to do.

There are always going to be days where I don’t want to wrap, where I am so exhausted from living my life that all I want to do is sleep and avoid it, where I get frustrated by the inconvenience of having to schedule my life around my legs. But there are also days where I remember that my daughter and husband can wrap their arms around me now, where it isn’t a strain to pull my leg into the car or walk with sandbags around my ankles, where I remember that I won’t always be like this if I work at it and where I am full of energy and hope.

It is hard, daily work, but the benefits far outweigh it all. It goes beyond portion control, wrapping, rewrapping, and laundering bandages. It is about hope, health, and becoming who you are inside. It is a growth process on all levels and I am happy to be back amongst the living.

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. Homeopathic, 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. My 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.