remembering to smell the roses

A few days ago, I had myself a good old pity party, complete with tears, ranting and apologies. It was fucking pathetic....but it was bound to happen.
I've been working too many hours for my body to cope, so therefore I've not been drinking enough water, eating enough protein or getting enough exercise, not to mention the lack of sleep.  As a result, my sleeping pattern is shot to hell, I'm now sick with some bug and my legs are swelling regularly.

Last Sunday, I drove for seven hours. Everyone with Lymphoedema just gasped and shook their heads, mouthing, "You idiot".  By the time I arrived home, I was nauseas and fatigued to the point where I couldn't even speak. I went straight to bed and fell asleep almost immediately.  Andrew kept his thoughts to himself.
The following day, I felt like absolute rubbish. It was a tough day.
Tuesday rolled around and I decided to rake the front lawn, then decided to prune all of the roses (we have around 20 bushes), then I set about weeding the entire garden.  Dumbest. Move. Ever.

Tuesday night, my legs were on fire and I was miserable. Andrew couldn't stay silent any longer....probably because I was baiting him. I needed someone to take it out on, I *needed* a fight because I was feeling sorry for myself and just needed to share the misery.  See? Told you it was pathetic.
Normally, I'm pretty philosophical about having this whacky chronic illness. I mean, I'm stuck with it, so there's no point being miserable all the time, life is too short. Shame I forgot that earlier this week.
So, fast-forward to the end of my teary rant and it turns out, I'm scared as all hell. My days of driving to Sydney on my own? Yeah, they're gone. And I haven't been on a long haul flight since I was diagnosed, so I'm fretting about what's going to happen when we take planned trips to Europe and the US.
It's now Thursday and the burning sensation has gone, so has the swelling but the fatigue is still sticking around, which is the perfect partner for this cold/bug thing I've got going on.
Fortunately, the pity party is over and it's time to get back on track with looking after myself, taking preventative measures and enjoying all that's great about my life....like my hair.

the things you learn

Blimey!  It's been quite some time since I've posted here.  Apologies to those who have been checking in.

It has been around a year and a half since my last post (really???) and I'm pleased to report that my lymphoedema is in check....for the most part.  It has been a rough eighteen months on a personal level, with much stress.  But, with lymphoedema lurking in the background, I just forced myself to put my feet up, apply self massage and slip on those glamourous compression stockings as often as possible.

Sure, I've slipped up and it has meant a day in bed feeling like rubbish but I did that a hell of a lot more in my twenties when I partied like it was 1999.

Recently I tried a month on the Candida Cleanse Diet.  I don't have Candida, but I thought it might pay to be good to my body.  The trial worked a treat.  I didn't have a single swelling episode in that month.  I had loads of energy (after the first week....because those first few days when your body is releasing crap, you feel exceptionally 'bleh'), I was never hungry (seriously), my skin looked great and I lost 11 lbs (ELEVEN. POUNDS!!).  It's not something I can stick to all forever but I think I am going to do the diet for one week of every month. 

I haven't seen my myotherapist for a while, which means I'm overdue for a drainage session.  But, listening to my body means that the results aren't dire if I am not attending regular appointments.

I promise I'll be back with another post soon!

oops!

Thanks for the emails! Trust me, I'll always keep coming back to my lympho blog but my posts on here will be sporadic as it was simply intended as some useful information for others with lymphoedema. If you don't have lympho, you just can't understand how fantastic it is to stumble upon someone else in your age range who suffers from it.......most people have never even heard of it.

Now, having lymphoedema, I am pretty careful about some things. I ALWAYS wear footwear, except for in the shower. I am super-careful when shaving my legs. I don't mow lawns, I don't lift heavy objects. Basically, I do my best to avoid all situations where I could possibly get a cut or scratch or have something heavy land on my legs.

The reason is that having lympho, my ability to fight off infection is greatly diminished. If I get even a slight infection in a cut or scratch on my legs, I must take antibiotics. If something heavy were to drop on/bump into my legs, I risk further damaging my lymphatic system and making the condition significantly worse. This has already happened once, when I fell from a balcony a couple of years ago. I was on crutches for months and I also got to enjoy fatigue to the point of not being able to even get out of bed. The swelling increased and it also affected my left arm. It just meant I had to work that much harder to keep my condition under control....which is kind of a big ask when you are already struggling.

But I got on top of it and have made strides, learning a lot more about the condition and how best to live with it. Most days are good days, with my limbs at their regular size. But the bad days are just sucky, which is why I try so hard to avoid them. However, when Nov/Dec rolls around, this is near-impossible to do because I simply can't take the breaks I require and still run my business successfully.

So these past couple of months have been a struggle but for the most part, I have done pretty well. But a couple of weeks ago, I fell over. Just a bizarre accident, where I took a step backwards in the living room, lost my balance and toppled over. Funny as all hell....if you weren't the person sprawled out on the floor.

Both knees had jammed into the carpeted (but concrete) floor and I had grazed one knee. As you can see from the photo, it doesn't look too bad. BUT, having lymphoedema, my inner reaction was to totally crap my pants (and say 'shit' a lot). And so I spent the next 72 hours checking my legs and the graze obsessively to see if there were any changes, like swelling or infection. No major changes. I was beyond relieved.

So it looks like I'm ending 2008 in pretty good health. Now I just really...REALLY...need to focus on getting some more weight off and not being such a clumsy fool.

Thanks to you all for the emails of support or questions or just for reading. I'll be back again in 2009 with plenty more info and links. Have a great holiday season!

still here!

I haven't abandoned this blog, I promise! It has been a tough year with many distractions....some of them great, like my business taking off (hoorah! world domination is just around the corner). As far as my lympho goes, things have been pretty good, thankfully. I've been eating fairly well, putting my feet up often, staying within my physical limits and all of that other malarky. Ok, I should be wearing my compression stockings more. A lot more. And I've been remiss in maintaining a strict self-massage routine but I am doing little things every day. Like, washing and drying myself as the myotherapist told me to do (always in an upwards/inwards motion towards my torso , never in circles and never down). It's tricky to get into the habit but once you do, it's easy to remember. I must be off but I promise to write a decent post shortly with a lot more information that I have to share!

sharing info

According to my blog stats, I get many, many hits from people who are doing AOL, Yahoo and Google searches for LIPODEMA. Here is a wealth of information for you. Hope it helps.

Also, I get emails from people who find this blog. Emails of support, emails of enquiry, emails of thanks. For those of you with lymphoedema or lipodema, I invite you to write a guest post for this blog, to tell your personal story, share tips, vent. You can write it under your own names or anonymously. Just click onto here and use the 'Email Me' link to send me your piece.

harsh reality sets in

I was talking to a couple of friends over the weekend about how I've been feeling lately, with regards to my lymphoedema. I was diagnosed around 18 months ago but I think it's only now finally setting in that it's a keeper.

I described it to a friend, yesterday, as being like living with a really shitty housemate. Even when they're not home, they've still left dishes in the sink and not flushed the toilet. You can't escape them.

Well, that's how I am feeling with my lympho. And wrapping my head around it has meant some spectacular mood swings for those around me. Sorry, loved ones, I really, truly am.

If you don't know much or anything about lymphoedema, just as I didn't 18 months ago, it's difficult to understand exactly why this illness is such an arse. So many things trigger symptoms, so many basic, everyday things. Foods, drinks, driving, stress, standing, sitting, hot showers, inactivity, over-activity. Basically, it's a little time bomb just ticking away (the woman in the link just tripped over. Look at the pics) , every day. I never know what will be the thing to set it off. If I'm incredibly careful, I can go for several days without incident. And THAT is what I'm struggling with most. Being on the ball every single day. It's mentally exhausting.

If you live with me, work with me, spend time with me, you won't know it but I am constantly assessing the situation to determine what I need to be doing to prevent the symptoms setting in. I may seem a little vague but that's because my mind is elsewhere. I hate that too.

When I do let my guard down, I suffer for it. Sometimes for hours, sometimes for days afterwards. So if I say I've got to sit down, I've got to do it NOW. If I say I've got to lay down, I've got to do it NOW. If I say I need to go, I need to go NOW. If I say I don't want to eat it, I really CAN'T. This is not me being lazy or boring or disinterested in what's going on, it's just that I hear the ticking of the time bomb and if I don't act immediately. KABOOM!

Sound dramatic? Well, it may sound like I'm overdoing it until you see what lymphoedema becomes when you are not incredibly careful.

Hey, look, it's not like I don't have a sense of humour about it all, I have to or I will lose my mind. This blog post is more for the hundreds of people who find this blog by doing Google searches for lymphoedema or lymphodema. They are obviously doing what I did 18 months ago, in trying to find out more about it. I just want to show the good, the bad and the ugly. It's not designed to be scary, just a reality check.

s-t-r-e-t-c-h

Before the Lympho kicked in, I could still do the splits thanks to my twelve years of competitive dancing. It was made ten times worse by the accident I had. Now I have the flexibility of a stick.

So, my goal for the rest of this year is to get myself back to the point of being able to drop into the splits from a standing position. Yep, you heard correctly.

I have been stretching most days and can already feel the difference but I have a long way to go. The stretching is also doing my Lympho a lot of good because it gets the lymphatic system moving and if it's moving, I don't swell.

I have ordered a yoga dvd from a local yoga studio because it is far less wanky than the big, commercial ones and I use my exercise ball, daily, to strengthen the muscles around my knees because they are a big problem (stupid, defective knees!). Basically, if I can get my knees strong and get my flexibility back, I'll be unstoppable!

progress

{a sign on the way to my parents}

I think a visit to my lympho blog is well overdue, so I've finally found my way back to update you on how things are going.

Ok, well I'm still on a fairly steep learning curve as far as keeping the swelling under control. But I have to say, I keep coming back to the basics that the acupuncturist/nutritionist told me as they always seem to work. Mind you, I've adapted it to suit my lifestyle because I simply can't handle a diet of no raw fruit and vegetables or spice.

So, I take things easy with the spices, adding far less than I used to but enough for me to get the essence of the flavour. It took some getting used to but my tastebuds have adjusted. Finally.

With regards to the raw food, I was told that I needed to keep my system warm and that I need to aim to have my stomach warm to the touch. In other words, make it an 'oven' to keep my system running in top order with everything flowing easily. So if I eat something cold, I accompany it with a hot green tea, no milk or sugar.

My myotherapist drummed into me that self-massage is vital and so I try to make this as pleasant an experience as possible by combining it with a warm (not hot) bath and incorporate a sugar scrub to keep my skin soft. I also don't feel the nausea when massaging my lymph nodes in the bath.....but I definitely do if I'm laying on my bed. I don't know why, the sensation just makes me feel horrid.

Right now I've got some strange rash just under my skin, on my feet but the swelling hasn't been bad at all. I don't know if it's associated but I should probably get that checked out soon.

I'm taking really good care of my feet, using three different creams every day to keep them soft. I almost always wear shoes or slippers, which my myotherapist insisted on and I try to raise them above my head for a spell, several times a day.

The fatigue is back, which is frustrating and some of the pain I felt a year ago has also come back. There are days when I really struggle to walk even when the limbs haven't swollen. On those days, I just suck it up and work on the laptop in bed. No point getting upset or stressed because that just seems to make it worse.

I guess my main focus now is losing weight, which will help things. So, that's my plan for the rest of the year, lose weight, lose some symptoms. Easier said than done with a wonky knee but definitely not impossible. Actually, failure is not an option!

See you again soon.

soooooo

I thought I'd report in on how I've been doing these last few months.....

Look, I'll be honest, I've been doing it tough. With my business taking off, my increasing hours in my day job, not eating as well as I should, not sleeping much at all, not wearing my compression stockings every day and neglecting my self-massage (not as fun as it sounds), my lympho has been kicking my arse a bit.

It's forcing me to slow down at a time when I would normally ignore exhaustion and body aches because I simply can't push through the pain and fatigue. In many ways, that's a good thing because it really makes me think about what I'm doing and what I'm eating, then how I could make improvements. I will admit that being a bit of a control freak, I occasionally get pissed off because I feel like I don't have any say in my health.....but that's usually when I've been stupid enough to let my feet blow up to ridiculous proportions and I feel like rubbish. It's then that I realise I'm actually mad at myself for not being on the ball.

I don't actually dwell on why I have lymphoedema even though it is currently affecting me on a daily basis. I think I'd probably drive myself insane if I looked at it that way. What I am determined to do in the coming months is to find balance and discover new ways/treatments to help reduce the symptoms.

In a year of challenges, this has definitely provided my steepest learning curve!

rollercoaster

Most of the time I feel like I've got my condition under control, by keeping my diet in check, countering cold/raw food with plenty of hot food and tea, steering clear of cheese, nuts, deep fried food and too much salt/sugar. Then there is the daily self-massage, the compression stockings, the lymphatic drainage etc. If I do all that, then I generally keep the symptoms to a minimum....generally.

But around one day out of ten, I feel like rubbish for no real reason. My lower legs will swell, I'll have incredible fatigue and there is just no rhyme or reason to the pattern. I will keep searching for a solution because I'm sure there is one and I'm just missing it.

The other things that tend to trigger some symptoms are getting my period and high stress, though I think the link with stress is because I am not drinking enough water when I'm tense.

The last few months have been a rollercoaster. There are times when I really feel like I've got the upper hand on this only to have the rug pulled out from under me when my body lets me down. I definitely try to be philospohical about it but there are definitely days where it shits me no end. Today I gave in and finally had some brie.......and now I am paying the physical price. My stomach is playing host to a dance party and I anticipate a fairly lacklustre start to my day tomorrow but I know it's coming, so I shall do my best to push through it.

I guess the thing I am learning is to try my best to stay on top of it but not fall apart when my health isn't going to plan. I also feel like that is filtering into other areas of my life, which is definitely a positive thing.

Holy crap! It works!

I've now had three acupuncture treatments and changed my diet as per the instructions of Bill (my acupuncturist and naturopath). Although I still miss cheese and nuts, I don't crave them as I did for the first two weeks.

It's now three weeks since I started and I am almost free of lymphoedema symptoms. I do still have some tingling in my left arm but it is nothing compared the pain and discomfort I have had these last few months.

Now I just need to work at getting fit because after three months of very little exercise, I'm feeling somewhat blimpish. But at least now I have the energy and motivation to exercise, unlike past months where I was suffering from terrible fatigue.

I can't speak highly enough of my experience with acupuncture and Chinese thinking on diet. Sure, it's not for everyone but being the sceptic I am, the results are above and beyond anything I expected. It is not a cure for me but it seems to have halted and reversed the debilitating symptoms I have experienced. Two thumbs up!

pins and needles

I had my first experience with acupuncture on Monday and it was really very interesting. I was most impressed with the fact that I didn’t vomit given my absolute phobia of needles.

Bill (the acupuncturist) felt my pulse and looked at my tongue, then proceeded to tell me all about my diet, with spooky accuracy. Apparently, I eat and drink far too many cold things. Which is true, I do drink a lot of cold water and I eat a lot of cold fruit and salads.

He said I eat a fairly healthy diet by Western standards but by Chinese standards, my diet is poor, especially for my condition. The idea is that all of the cold stuff I’m putting into my body is constricting everything and slowing the flow of things like my lymphatic system and metabolism. The diet he suggested for me is simple: Nothing cold No raw food No cheese No spices

No deep fried food

As I lay on the table with needles sticking out of my legs and arm, I was wondering how the fricken hell I was going to accommodate the changes. But the more I thought about it, the more I realised that although I love cold/raw food, iced water with lemon, cheeses of many varieties and every spice imaginable, there is still plenty that I can eat and that adapting wouldn’t be all that hard.

So, these last two days, I’ve been free of all my ‘demon’ foods, eating everything warm-hot, drinking a lot of plain green tea, drinking water at room temp and heating my fruit. Instead of a protein shake for breakfast, I’m sprinkling protein powder in my porridge.

I must say, I feel pretty bloody good, no swelling in my legs and my arm hasn’t had any pain. I’ll try it for a month and see what results I get. God I miss cheese…..

let me introduce you to my pal, Lymphoedema...

Until February 2007, I was blissfully unaware of what Lymphoedema was. But now that I have been diagnosed with it, I’m having to not only learn as much as I can about a condition I’m now stuck with for life but I also have to explain it to family and friends….and health professionals and insurance brokers….the list goes on. I talk about my experiences with Lymphoedema in my business blog but that really only scratches the surface, so I thought I would create a reference point that combines both my own thoughts and those I’ve discovered from books, the internet and health professionals.

Living with lymphoedema (from Lymphoedema by Ausmed Publications)

“The person begins to realise that from now on normal life may be a struggle. Simple daily tasks become mountains to climb when you have lymphoedema. Even when it is mild and uncomplicated, there may be a fluctuating ability to carry out normal tasks such as washing, bathing, finding clothes and shoes which fit, getting dressed, driving, peeling vegetables, opening bottles, writing, holding a newspaper, putting on makeup, combing hair, standing about or sitting for any length of time at a desk, in the theatre or on public transport. Depression can persist from the very early stages if treatment is not offered. Some people can become reclusive, particularly those with primary lymphoedema. Concomitant symptoms are common with the continuing threat of dangerous and debilitating infections”

Symptoms of lymphoedema (from Lymphoedema by Ausmed Publications)

*I have these symptoms

*I don't have these symptoms

~An extreme bursting sensation of the limb and body (*it's not nice!)

~A feeling of heat and severe irritation in the swollen area (*hurts)

~A constant dull ache or severe pain in the affected region (*I deal with both)

~A burning sensation and pressure in the joints, particularly the digits (*my left elbow is worst affected)

~Backache (*yep)

~Cramp (*sure do)

~Migraine (*I get headaches but not migraines)

~Pins and needles (*constantly in my left arm)

~A loss of feeling as the limb becomes solid (*sorta)

~Spontaneous blisters and ulcers in the affected area (*fingers crossed I don't get these)

~Skin dehydration with flaking and skin breakdown (*yep, lizard skin that I have to exfoliate and moisturise daily)

~Muscle wasting (*hopefully won't happen)

~Constant exhaustion (*oh dear god, yes....it makes me feel like shit)

~Increasing intolerance to changes in temperature (*heat = baaaaad)

~Obesity (*shut up)

~Athlete’s foot (*I never had this until late last year)

~Recurrent infections, often with the need for long-term antibiotics (*fingers crossed I can avoid this!)

I can’t really work out how long I’ve had it but I can remember exactly when I first noticed it. In the two weeks leading up to my 35th birthday, last September, I had shocking pain and tingling in my feet. I was working in fashion retail management and it was a busy time of year so I just had to deal with it but the pain was unbelievable. The week after my birthday, Andrew and I went away for the weekend. We stopped at a walking trail to a waterfall and I struggled with every step. On the way back, I was close to tears and by the time we reached the motel, my feet had swelled significantly.

At that stage, I put it down to being unfit, overweight and too much salt in my diet.

I struggled at work for the next couple of months, I was in tears from the pain most days and the swelling did my head in. I finally resigned and was offered part time hours with the same company but even that was a struggle.

I finally had tests in November only to be told that it was nothing and I just needed to take it easy. Then I was told it was probably Arthritis. It was not until I had a chance conversation with a friend that I discovered what it was. Unbeknown to me, my friend Kerrie had been living with Lymphoedema for several years. I was explaining my symptoms and she suggested I ask my doctor if I indeed had Lymphoedema. Bingo!

Lucky for me, Kerrie had done all of my groundwork as far as finding a great therapist and tips. It’s also comforting to know someone who can understand the condition.

A couple of weeks after my diagnosis, I had an accident. A balcony I was standing on collapsed and I was on crutches for four months. I gained weight, I got depressed, I had cabin-fever…..and worst of all, I couldn’t get treatment for my Lymphoedema because I couldn't have my knee moved or touched without being in agony.

It’s now May 2007. I am off crutches, I’ve been working at a desk job for the last month and I’ve started lymphatic drainage treatments….so I’m not such a sad sack of crap anymore!