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.

Entwined

Photo Credit: VintageMedStock.com via Compfight cc

Photo Credit: VintageMedStock.com via Compfight cc

I am currently in search of an Endocrinologist. Per friends in the area who are nurses, it has been recommended that I look for one outside of Ocala; toward Gainesville or Leesburg.

I spoke to Edely Wallace again not long ago, the Lymphatic Yoga Expert in Orlando that I really want to meet, and she told me that she had just returned from training in Europe. She regularly makes trips to study up on the newest discoveries and information pertaining to her field. I love that.

This time, she took my case to them and got some new information.

Much to everyone’s surprise at the conference, Edely was told that I should look for an Endocrinologist – that there is a link between lymphedema and the pituitary and hypothalamus. I was thrilled to hear the news from someone in the field, about a new path to explore in my healing. It didn’t come as a shock to me, though, possibly because I have observed patterns my whole life that, with wiser eyes, I can see the connectivity of it all now.

Paisley copyright 2013 Renmeleon

PATTERNS

I used to go camping ALL the time. Seriously, all the time. In fact, there was a time that we went every weekend for several years with the exception, possibly, of Florida’s summer months. I loved it. I was in the SCA, a worldwide-spread medieval reenactment group, and there was always something going on. We packed healthy food most of the time, but soda was pretty prevalent. Mountain Dew especially.

I usually drank a lot of water, but the soda was handy as there was always a cooler nearby. There were times when my ankles would swell, usually in the summer, and I blamed the heat. An observant EMT friend of mine commented one time that I should stop drinking soda and I started seeing a pattern. When I drank soda, my ankles would swell. Hint number one.

So I started looking back further.

I was 5’7″ when I was nine years old and built like a 16-year old, C cup and all. I stopped around 5’11 3/4″ (basically 6′). I was always built big, even when I was near the slender end of things, and was nicknamed the Amazon, lovingly, by an ex-boyfriend’s grandmother; he was well over 6 foot and I was the first girl he’d dated that was “tall enough” for him, in her opinion. And I wore size 11 shoes.

Further back still, I’d always had recurring issues with my tonsils. Always, always, always. I can count on one hand the number of days I was well growing up. I was practically homeschooled, my mother bringing home weeks, sometimes months, of school work for me to do at home. Thank you, mom. xxoo She argued with countless doctors to have them removed, but no one would do it. Mom was always considered a bit of a hypochondriac but, honestly, knowing what I know now, she was right 98% of the time.

But don’t tell her I told you that…

Photo Credit: renmeleon via Compfight cc

Photo Credit: renmeleon via Compfight cc

JOURNALING FOR HEALTH

I’m a big journaler by nature. Occupational hazard. So I have started keeping a health journal within Evernote. I keep track of what I eat, how it makes me feel, the swelling in my legs, anything else I want to track. I can also scan in artwork and my hand-written journaling. I don’t track calories or intake values, that’s not why I do it. I look for patterns and weed out foods that may be causing me to not feel well. I also keep track of how much sleep I’m getting plus the things that make me happy and well.

Have you noticed any patterns in your life that have increased or lessened your symptoms?

A Need for Education

Photo Credit: odin's_raven via Compfight cc

Photo Credit: odin’s_raven via Compfight cc

Blogging has never been one of my strong points, something I am hoping to change as I push myself harder this year. It has been a long time, way too long, since I posted last. So I thought I would pop in and share some things with you.

THE GROWING LIST

I posted last year about my out-of-the-blue Hiatal Hernia attack that threw me for a loop. Being ill isn’t new to me, but I usually have some type of warning. Getting sideswiped brought about new contacts and information, but also made me increasingly aware of the deficit of information out there about LE. At least in the United States.

A NEED FOR MORE EDUCATION

My last run in with my Gastroenterologist left a lot to be desired. According to him, Gastric Bypass was the solution for everything: Your nose is running, Gastric Bypass. Your ear falls off, Gastric Bypass. You have a cowlick, Gastric Bypass. ANd, keep in mind, this is also the same man who told me he knew nothing about the lymphatic system, yet still wanted to crack me open. In fact, what topped it, was when he told me, and I quote…

“(scoff) You won’t find a vascular man that knows anything about the lymphatic system. (laugh)”

Wow. Really?

If that’s true, the entire medical profession needs to go back to school. That’s like saying blood has nothing to do with the cardiopulmonary system. The Lymphatic System is called “our 2nd circulatory system” for a reason. It’s important.

I remember I just stood there and stared at him in disbelief a moment before hemming in my anger and saying something to him along the lines of “the lymphatic system affects every system in the body, every”. Of course, the rest of what I was thinking isn’t something I’ll repeat here. He just smiled and then his nurse proceeded to tell me that looking things up on WebMD online isn’t reliable. When I told her I read actual medical journals and spoke to therapists in the field she just walked away. I’m not medically trained, therefore, I know nothing.

I’m not medically trained, but I read and I absorb. I have been living in this body all my life, know it’s ins and outs (no pun intended), and have been studying since the moment I finally found out what was wrong. Five years worth of “your fat, you need to exercise, here’s some water pills” failed me (and almost killed me) until someone who paid attention referred me to my first therapist. I think to deal with something like this and not dig your heels into the research is counterproductive to living and, dammit, I really want to live.

After that last meeting with my (now ex) GI, I realized it is that kind of haughty ignorance that makes me the most furious. It’s scary. We rely on physicians to be knowledgeable, to know as much about how our frail, human bodies work as they do the apps on their smartphone, and yet, well, they don’t. The medical industry in the United States, and that is what it is never forget, an industry, is broken and our physicians need to stop resting on their laurels. They need to be required to take workshops on anything related to their field.

I have come to learn several things over the years, but one stands out: The traditional medical industry condemns alternative medicine because, for one reason, they can’t make money off of it.

This isn’t true for all fields of medicine, it just seems prevalent in the United States. Some physicians have actually, happily, embraced the value of alternate therapies and I love them for it. Their lives and the lives of their patients are not made easy by the rest of the system, though, and there’s something wrong with that.

The biggest focus should be on continuing education. Working together, collaborating and consulting with other physicians in other areas of expertise should be the norm. Specializing in a particular medical field should not negate the fact that you need to learn about other systems, they are all connected.

Revelations.

2013-07-28 14.21.09I received a phone call a few nights ago from Edely Wallace of Lymphatic Yoga Expert in Orlando. Her assistant had called me a few hours before to see what time would be good, so I knew it was coming. It was the most wonderfully empowering 36 minutes of my life. Based on my history, Edely confirmed a lot of my research and gave me a lot of new information that I’m really excited about. She would like to meet me in person to further assess my situation and to teach me specific exercises for each limb. Two things I hadn’t known, though, were…

  • Never wrap all four limbs at the same time. Do two at a time. Legs one time, arms another. If you were to wrap/compress all four, it would overload your heart. Not good.
  • I may be systemic, but there is no such thing as “completely blocked”. Fabulous news considering I was told I was completely blocked. If your lymphatic system were completely blocked, you would be dead within 24 hours.

I mentioned the conversation I’d had with my gastroenterologist recently. My theory was that the lymph nodes in the upper portion of my abdominal area could be putting pressure on my diaphragm, in turn causing the hiatal hernia issues. Edely said that LE is a degenerative, progressive condition that will affect every part of my body, all of my internal organs. Left unchecked and untreated, it can cause permanent damage or even be fatal. The best part of the conversation with Edely was being told that there was no reason why I couldn’t treat and maintain my LE. Myself. At home. For someone who has been on disability since the first of the year, yet unable to get into therapy, this is incredibly wonderful news. She urged me to do diaphragmatic breathing three times a day for 20 minutes, elevate and massage my legs, and do the neck exercises she outlines on her site.

I’m looking forward to learning more and sharing it. There is one thing I just have to keep remembering:
LE is part of my journey, but it is not who I am.

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.

Austria or Bust

My family and I are going to Europe for three weeks in a couple of months, a lifelong dream come true and the educational experience my daughter will never forget. I’ve been concerned about the trip, mainly 14 hours on a plane I don’t know if I will have enough legroom on, and whether or not we’d be able to get home. It sounds stupid, I know, but it really is a concern…

Our plane tickets go into Lisbon and we are supposed to fly home from Stockholm. All well and good, but the funding for our train tickets fell through and we currently have no way to get there. On top of that, we have to buy the tickets as soon as possible, because we have to make reservations on each train.

I’ve launched a GoFundMe campaign to raise the money and could use your help spreading the word. If you could pass it on I’d be grateful, if you can donate I’d be humbled. Our plane tickets are non-refundable and I have the opportunity to go to the largest holistic Lymphedema clinic in Europe, the Wittlinger Lymphedema Clinic. I am hoping to be evaluated; though I am not sure of cost, I’m researching it. They also do facial massages and pedicures specifically geared toward LE patients! As I have systemic Lymphedema, I am unable to get regular massages or pedicures and, though that is least of my goals, I cannot tell you how relaxing it would be if I could.

Anyway, if you’d be so kind as to pass on this link – http://www.gofundme.com/planetrainelephant – it will help us get to Wittlinger and home!

I am compiling a book of art, photography and stories from the trip (as well as for freelance travel articles) as an added source of income. I plan to launch the project on Kickstarter, but am not allowed (by their rules) for fundraise for the train tickets. The project, From the Back of an Elephant, is the reason we are making our way through five countries by plane, train, and elephant. If you’d like to know more, stop by

Thank you again for being here, it makes a difference.

Limitations

“Shoot for the moon. Even if you miss,
you’ll land among the stars.” – Les Brown

Most of us are told growing up, if we are lucky, that there are no limits except those we impose on ourselves. We are encouraged to be independent, pioneering individuals; free thinkers who take the initiative and make our own paths in life. On the opposite end of the spectrum, those of us with Lymphedema are given strict limitations and told to confine ourselves to them while staying positive which can seem like a contradiction.

My right wrist has been stiff for the last few days and won’t pop. It is difficult to pick things up and my range of motion is limited. It’s a little swollen, all because I did something I normally do and didn’t think about it till after the fact.

Theatre de L'Elephant

I have been converting a box into a paper theatre for a Kickstarter video featuring a book project I am launching soon. I used my awl to poke holes into the top of the box. No big deal, but my wrist hasn’t been the same since. It was within my ability to do, and I didn’t want to wait all day for my husband to come home to ask him to do it for me. I don’t have an issue with asking for help if I really need it, but I don’t like piling more on my husband when he gets home from work. He’s a huge support, and would do it without complaint if I asked him, but I don’t like being a burden. So what it comes down to is the fact that I need to rearrange my own way of thinking about all of it, not his. It’s my insecurity about it, so I’ll reevaluate.

It is hard to reign yourself in when you have been so used to doing the simplest tasks for yourself. You feel like a burden, even to yourself, and it can add to the already potentially depressive lifestyle of LE. You have to rework your thinking, though, and be gentle with yourself. LE is a definite lifestyle disrupt, but you have to reset and reevaluate, pick your battles.

Taking my own advice, I came up with a few things.

Breaking Things Down

Some of the things I can do for myself to make it a little easier next time…

  • Make a list of all of the things that I need to get done, then figure out what my daughter could help me with and what I’ll need to ask my husband for help with. Most things, when I look at the list, my daughter could probably help me with so I won’t feel bad about hitting my husband with all of it.
  • Plan out projects ahead of time and schedule work sessions around the availability of help. In other words, don’t start on something I need help with in the morning when my husband is at work. It will just make me antsy all day and I’ll end up doing it myself so that it’s out of the way. There’s plenty of other things that I can do in the meantime. I’ll feel productive, I won’t endanger myself, and I won’t make myself crazy waiting.
  • Schedule help ahead of time for larger projects. Let my daughter and husband know that, for example, I want to move furniture on Saturday. That way they know how to plan and it is less stressful on everyone.
  • If you have a lot of little tasks that you need help with, schedule one block of time to get it all done.

Working on the paper theatre, there were several elements I should have had help on. Gluing and cutting paper, no problem. Scanning, no problem. Cutting the box and poking holes, ask for help. Using a pair of scissors to cut cardboard seems minor, but it can make hands and forearms swell. I have to look at what I can do, though, not what I can’t.

Photo Credit: angus clyne via Compfight cc

Being Like Water

All in all, the sky is still the limit. There is still so much we can do, even with LE, we just have to adapt and readjust. When I think of adaptation, I think of water. I am a water sign and adaptation has been a lifestyle for me, whether because of outside forces or my own doing. One of my favorite quotes about water that sticks with me is from Arthur Golden’s Memoirs of a Geisha.

“Water is powerful. It can wash away earth, put out fire, and even destroy iron. (…)
Water can carve its way through stone. And when trapped, water makes a new path.”

Being like water means adapting to your environment. We all live in our own little biospheres inside of a larger world of organized chaos. Ever changing, we have to be able to adapt in order to survive. And, sometimes, no matter how much we plan, things happen and that’s ok. It is what it is. You learn, you adapt, you move forward.

Keep Moving Forward

Even if your pace is slow, as long as you keep moving forward you will see progress. Be gentle with yourself, it’s ok. Do what you can, plan ahead around the things you can’t to minimize frustration, and realize there are other ways to save the world.

The greater the risk.

Life is inherently risky. There is only one big risk you should avoid at all costs, and that is the risk of doing nothing. – Denis Waitley

With our trip to Europe less than three months away, I have been reading up on LE and the risks associated with flying. With any trip that requires you to sit for long periods of time, there are always risks. You cannot live in a cage though; you might be safe from harm, but you are safe from all the wonders of the world too.

Like a Sardine

My hope had been to be in therapy long enough before our trip to get some of the fluid off, as well as some of the weight, so that I could be comfortable on the flight over. As we are flying on airlines I’ve never been on before, I can only hope they are more spacious than my previous knee-eating, butt-squeezing experiences with United.

My trip to Maryland recently had me crammed into a space my child would have been cozily nested into, so the trip back I bit the bullet and spent the extra 37 dollars to upgrade to Economy Plus. I lucked out behind a bulkhead with enough room to not only stretch my legs, but store three suitcases and a sherpa. However, my butt barely fit in the way-too-narrow seat, so I had to keep my legs moving in order to fight off the lack of circulation from being severely pinched at the hip. Whoever designed those seats got it backwards.

Keep It Moving

Cabin pressure, lack of circulation, blood clots – all of these things require caution and preparation.

Oddly enough, I learned that cabin pressure is actually weaker than normal air pressure, hence why your ears pop during take off. I probably knew that somewhere along the line, but it isn’t something I normally think of, so I’d gone with the falsehood that pressure increased to maintain things. Nope.

So if the cabin pressure is less than when on the ground, being compressed when you fly is always recommended. Possibly even wearing bandages over compression stockings. Also, keep an eye on leg pain. Though it can happen anywhere in the body, if you take long flights especially and your legs are hurting, don’t ignore it. It could be an early sign that you have a blood clot aka deep vein thrombosis (DVT). As always, watch for swelling and redness. If the area is carrying heat, get to a doctor. Now.

There are several things you can do to fend off problems while traveling:

  • Avoid alcohol and salty foods. Resist the midges. While fun and oh so tempting, they won’t help your lymphedema. Darn it. You could also take tea bags and ask for hot water.
  • That said, drink plenty of water.
  • Wear loose, comfortable clothing. Compression is for bandages, not clothing.
  • Move around the cabin frequently and keep your limbs moving when you have to be seated. As air travel is sedentary, your circulation needs a little help. Slap on some tunes, Zumba!
  • Bring lotion. Cabin-pressured air is usually very dry. My favorite, out of everything I have tried over the years, remains Aveeno Baby.
  • Sit in a bulkhead or first class seat if possible. Your legs need room, even if your legs aren’t what is affected. There are huge clusters of lymph nodes in your pelvic and groin area, so don’t neglect those areas. Trust me, paying a little bit more is well-worth it (unless you are on United).
  • Wheels are your friend. No carrying heavy bags! You damage your skin and pinch off nerves and muscles with heavy bags strapped all over you. Two wheels are great, FOUR wheel “spinners” are fabulous.

Onward and Upward

I know that I haven’t covered everything, but this is a good start. If you travel a lot and have any tips for flying or traveling in general, please feel free to post them below. I’m looking forward to seeing what you have to say!

_________________

Additional resources:

http://www.lymphnet.org/pdfDocs/nlnairtravel.pdf (links directly to a PDF)

http://www.lymphnet.org/lymphedemaFAQs/riskReduction/travelTips.htm

http://www.lymphnotes.com/article.php/id/33/

http://www.hematology.org/Patients/Blood-Disorders/Blood-Clots/5233.aspx

Sprechen sie Deutsch?

One of the accounts that I follow on Facebook, Lymphoedema NZ, posted something that has me somewhat giddy. It has also made my fundraising for the rest of our trip to Europe an imperative. We are planning to visit a dear friend of mine in Rosenheim, Germany the first week of October and I just found out that the Wittlinger Lymphedema Clinic, a 40-year old holistic Lymphedema treatment and management center, is 35 minutes away.

Can we say road trip?

Sadly, I cannot say with conviction right now that we will get there. We have our plane tickets, thankfully, but getting out of Lisbon to anywhere else is up for grabs currently. Funding fell through for the ground transportation and hotel portion (3kUS) of our three week trip to Europe.  It is in God’s hands, though I am not one to sit and wait, so I’ll be doing bake sales and Kickstarter…

The purpose of our trip is:

  • Educate my daughter (history, language, culture, Swing dancing in Sweden, and how to ride a 40-foot automaton elephant).
  • Research and photos for multiple freelance travel articles as well as for features for my magazine. (a way to help myself reach my goals)
  • Meet friends who are practically family that I have known (and some worked with) for 16 years in person for the first time. /SQUEE
  • Bucket list. I’m tired of saying “someday”. Someday is now. I may not be here next year.

Reading up on the clinic, I am going to contact them and see if I can learn more about Lymphology from their point of view, maybe see if I can hook up with them while we are out there. Also, they have facials and medical pedicures for people with Lymphedema…um…yes please! It also looks like they are associated with the Dr. Vodder (as in method) Academy. The Vodder method is what has been the most successful for me.

Excited and hopeful, I’ll post more about the Kickstarter fundraiser soon. In the meantime, my PayPal is renmeleon at gmail at com for anyone willing and able to throw a dollar or two our way to help us get there. I will be uploading photos from my phone (my only camera currently) to a blog site that I have built specific to that purpose. [ www.totraverse.com ] You will also find more about our trip there as well, so come follow along with us!