Featured Pandere-shoes-for-unique-soles

Pandere Shoes for Unique Soles

‘Pandere Kickstarter Campaign’

Three women entrepreneurs have started a unique shoe business called Pandere.  When I read about Pandere shoes I was only too happy to blog about their Kickstarter campaign.  I encourage you to visit here:

http://bit.ly/panderefacebook

‘The Three Founders of PANDERE SHOES’

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The three founders from left to right are Celia Crossett, Laura Oden and Ayla Rogers.  Pandere’s founder Laura Oden has *lymphedema (*lymphoedema -uk) for over forty years.  A fellow lymphie!  Laura observed a gap in the market and along with her founders came up with one of their following patents:  

PADFEET

This patent design expands 1.5 sizes in width and volume, giving more comfort.  Laura observed there are millions of people globally that have swelling limbs and feet due to a variety of medical conditions. They are mainly edema (chronic oedema), diabetes, pregnancy, arthritis and a host of other conditions that can affect one or both feet to swell. 

 We believe at Pandere shoes will restore dignity, comfort and mobility to people with hard-to-fit feet

Like Laura, myself and millions of individuals that have problems with lower limb swelling buying suitable footwear isn’t always easy.  

That stress of finding suitable footwear is taken away and replaced I believe by the PANDERE shoes 

In terms of my personal experience I know from working in the summer months I need to change my shoes as my limb would expand with higher temperatures.  That means two different shoe sizes to cater for one limb.  A PANDERE shoe would expand for me and my needs and, therefore a great product to purchase!    

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That is the aim of Pandere shoe to put the wearer first and to help give a more stylish look as well as keep you on your happy feet longer! 

‘Pandere Aims and Future Plans’

The aim of this campaign are to raise funding for more expansion.  So far the shoes are aimed at women only but they have future plans to expand in order to cater for other genders and age groups.  That is what attracted me to Pandere shoes because I like millions of individuals worldwide need suitable shoes to live.  To order or show your support press link here:

http://bit.ly/panderefacebook

 Only available on KICKSTARTER press link for more information:

Pandere-shoes-for-unique-soles
Pandere-Shoes-for-Unique-Soles

Images from Pandere & Pixabay.com

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The Cellulitis Bubble

‘Bank Holiday Bubble’

My bank holiday started by dreaming of a bank funnily enough.  It was like the one in the Harry Potter film all fortified and filled up with greedy looking miser elf’s.  I kind of went in and blew it up with lots of bombs.  Then I woke up and realised I was coming down with a cold. Strange dreams are caused by fevers and that was one of them!  Now I am on the mend and back to blogging on the tail end of this sunny or rainy (depending where you are) bank holiday weekend.  

As I started to write this blog this morning I noticed the prompt word from somewhere on WordPress was ‘bubble’.  Hence notice the overall theme is bubbles.  Anyway, I wrote out 300 plus words then decided to delete it as it was purely cathartic.  It was pure crap for a good reason.  I wrote again another 400 words and when it came to publish the opportunity had closed.  Mmh, well it is maybe not meant to be perhaps another time…     

‘The Cellulitis Bubble’

The one thing I can publish today was the toxic bubble of cellulitis I endured over four precarious days.  

I started to recover slowly but my lymphoedema leg became like a celestial map of red hot drawf planets. I could have played a galactical spot-to-spot game. 

To be honest I was out of it with the fever and then the medication gave me side effects I didn’t anticipate…

What is it?

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Cellulitis-and-Bubbles

Day 1 & 2  I thought I had caught a cold.  This was my first time and hopefully the last.  The chills are the worst!

From my own experience the first thing about having cellulitis is that I wasn’t fully aware I had it for the first twelve hours.  Initially I went to bed feeling the chills last Thursday night.  A series of strange dreams as mentioned before and then I woke up with a higher temperature and feeling nausea on Friday morning.  It felt like flu, but it was different.  The whole day of Friday was a wash out and I couldn’t do very much.   Then when I saw my red hot spotty lymphoedema leg around 4.40pm I immediately called for a prescription.  The chemist shut at 5pm and it was the weekend the next day!  I wasn’t in a fit state to go anywhere.  However, my partner retrieved my meds in time and I was so glad he did it!   I knew if he didn’t it would require a sixty mile round trip to the local hospital and that wasn’t where I wanted to be on that day.  The cellulitis symtoms of chills, nausea and high temperature are horrible.  I just wished I knew earlier in the day but I felt no cellulitis pain that came the next day…

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The-Cellulitis-Bubble

Day 3 & 4 Pain and then some more pain

On Saturday morning I stood up and it felt weird and uncomfortable.  I had to use my walking stick to get about.  My lymphoedema leg was very warm and it was more swollen than usual.  It felt like my leg was filled up with warm to hot potatoes with needles sticking out when I stood up.  It felt heavy, hot but as soon as I was horizontal all the pain went.  On all four days I never put on any compression garments as advised by Lymphoedema literature I had to hand.  

In this bubble of convalescent I pondered and chatted by text to a friend about the causes.  I knew I skimp on mosturising a little and all my compression garments were clean.  I was mystified why it occured. Then it was an eureka moment and I told my friend why it occured the way it did.  I shall come back to this in another blog in the future for now it is not important to mention.   

On Saturday night my sleep was very poor and I woke up my partner many times as I ran to the bathroom trying to vomit up but nothing ever came.  It was the antibiotics they can play havoc with your stomach lining.

On Sunday morning I felt like my stomach had been in a boxing ring. My partner looked like he hadn’t slept (he hadn’t) and he slowly went off to work not noticing he had put on a dirty jumper.  A slow-mo of a morning.  The only thing I did notice that morning was that I was wearing the same colour as to what I was eating.  A splash of yellow and a healthy bowl full of bananas, honey and natural yogurt.  I may have look like a ray of sunshine but I felt like I had been sucked into a black hole and spat out again.   

In conclusion my friend said I have now officially made it into the cellulitis club!  Oh, sweet Jesus.  

Theraband-exercise-resistance-Lymphoedema-legoponics-blog

The Awesome Theraband

Wellbeing Tip #1 – ‘Dry Brushing’ & ‘Gravity is your friend’ – see blog link:

https://legoponics.blog/2018/03/18/lymphie-conversations-wellbeing-tips

Wellbeing Tip #2 – ‘Theraband – Resistance Exercise’

A theraband are latex bands or tubes that are used for physical therapy and light strength training exercises.  They are also commonly used by athletes but also people who are looking for a low-impact strength training workout

https://www.wikihow.com/Use-a-Theraband.  

Since mid-February I have used this method of resistance exercise to help with a tennis elbow and strengthening the lower leg calf muscles.   The tennis elbow is mending slowly and the reason for the lower calf exercises are to help avoid limping.  Any limping isn’t good for the posture in the long term.   

My long term goal is to walk more effectively despite my lymphoedema in my whole leg  

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I have lived with lymphoedema for four years now and the important thing is to do something active every day.  The purpose being to improve on flexibility and mobility and for me to get from A to B without using a walking stick.  All exercise helps lift your mood too.    

G R E A T   F O R   U P P E R   L I M B   E X E R C I S E S 

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L O W E R  C A L F – E X E R C I S E S  

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I bought a couple of therabands online as suggested by my physiotherapist.  These therabands are simple to use and very effective to help strengthen muscles and to help lose weight too.   

Pin Interest board for specific usage of the Theraband

https://www.pinterest.co.uk/mylegoponicsandlifetinkin/legoponicsblog-lymphoedema-exercises-tips/

This is a great wellbeing tip for all types of individuals to do at home.  A gentle way to help tone, lose weight and strengthen your core and limbs effectively.  Pilates greatly use this method of resistance exercise.    

‘Happy Feet’

On a personal level the theraband resistance exercises have helped with a specific problem caused by wearing open toed compression stockings.  The next picture you can see the difference between open and closed compression garments.

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The opened toes are a long term favourite of mine as they are great to wear with sandals in the summer time.  However, personally speaking the open toe garments can help build up lymph fluid directly under the toes making it uncomfortable to walk about.  In seeing a qualified physiotherapist my woes were gone in one day!     

I was amazed that a simple calf exercise made a dramatic difference and very quickly too!  I went from limping to walking normally (as i can) in one day!  

I still get bad days where I can’t walk far but I am improving as the theraband exercises increase.  I am very grateful to my current physiotherapist based in Lerwick, Shetland.   Her service has helped me regain my confidence to be more mobile and to have use of my arm too. All images see Welcome to…page. 

Thank you for reading (:

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‘Winter to Spring Puckles’

This week there was an abundance of spring snow showers.  The kind of snow showers where the snowflakes are super chunky and fall gently like a feather.  I love watching snowflakes in the very early stages it is both mesmerising and helps turn any dull landscape into a winter wonderland

‘April’

However, in early April it is all too short-lived and the snowflakes melt as soon as they hit the ground.  Only on the higher grounds and surrounding hilltops keep a little white dusting of snow.  

The dark brown peat hills look like an overbaked chocolate cake with white icing sugar sprinkle on top 

If the snow is still there the next day I know it is colder than usual and my heating goes up.

Winter-to-spring-puckles

Springtime in April to my observation plays the game of hide and seek with the weather elements.  For example, it can be blazing hot and sunny in the morning and then turn icy cold in the afternoon.  There are days when the heat in the home is unbearably hot or when the heat is needed it is low to very cold.  A couple of nights ago I stupidly turned all my central heating down.  The next day I was wearing more woolly garments inside than what I would wear outside!

On another night it was unbearably hot, and I forgot I left my window open during the night.  It was about four o’clock in the morning and I woke up frozen stiff!  There is never a happy medium and thankfully all my central heating is getting replaced this year by the local council.  It might not make any difference as the weather is always changeable never consistently one temperature in Shetland.

All this hot and cold malarkey plays havoc with my sleeping patterns.  Lymphoedema and warmer temperatures are not the best of bedfellows

‘Puckles’

Lastly, what are puckles that I mentioned in the heading above? Puckles are basically what I call hailstones.

According to the 2014 Edition of ‘Shetland Words’ the word puckle is defined as ‘a single grain of seed; a small quantity.  Okay, I didn’t know that until I looked it up!  

Haily-puckle is the specific definition of hail-stone.  I like many locals still call hailstones puckles only

In an odd way calling spring hailstones puckles is like saying they are like the seeds of springtime.

A puckle proverb:

Mony a puckle maks a muckle

(Shetland Words, 2014).  In English, that maybe translates into, ‘many seeds make more’.  In conclusion, I think that is very apt as it is now officially springtime in the UK.

Winter-to-Spring

 

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‘Island Travel Patient II – seeing RED!’

To travel down to the mainland Scotland is a straight forward procedure be it flying or ferry for the island patient traveller.  You get your tickets and organise yourself to get from A to B.  Many patients from the northern islands like Shetland and Orkney usually go to the ARI hospital in Aberdeen city.  The ARI ‘Aberdeen Royal Infirmary’ is one of the biggest hospitals in the NHS Grampian area.  It serves a wide geographical area for the north of Scotland.

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In terms of flying and arriving at Aberdeen International Airport patient travellers need to catch a shuttle bus to get them to their specific destination. It is the (BRC) ‘British Red Cross’ charity that supply this shuttle service to all NHS patients. http://www.redcross.org.uk/What-we-do/Health-and-social-care/Independent-living/Transport-support

BRC symbol

Depending on your fitness upon arrival to the airport you either walk, limp, use crutches or be pushed in a wheelchair or pushchair (child) and, head towards the entrance of the airport.

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Seeing RED?

On the way out from arrivals there is a man or woman in a bright red BRC fleece jacket holding a clipboard.  They are waiting specifically for you to approach them.  Hopefully their clipboard shall have your details on it.  The BRC workers have the job of ticking your name off and giving you clear instructions to find the shuttle bus outside.

It should be simple but, it can potentially go wrong.  Looking for lost individuals in a large airport or hospital within a time schedule is no fun from what I have observed.  The BRC have a schedule to keep and like air stewardesses or stewards they need you to be on time.  Prior travel information is usually given verbally by travel booking staff when you pick up your tickets.  There is also paper information with your tickets explaining too.  Your only input is to listen, read and be aware of these arrangements.  

If you don’t you are in trouble and, it be all your own fault for not paying attention! I know.  Why?  Because I fluffed it up four years ago on my first trip down.

On my recent trip from Aberdeen airport I got chatting to the BRC driver.  I asked him if everything was going smoothly on this trip? 

Well guess how many walked past me today?  I guessed four tops!?  He sighed, no! double that it was eight people walked pass me.  I’m wearing a bright Red jacket with a Red cross on it! They still walk pass… 

No one reads those little pieces of paper they give you  

He continues:  ‘I could be dressed up as Santa Clause in bright red with a flashing light on my head and their still walk pass me, guaranteed!…he repeatsGUARANTEED!’

I understood clearly and then I admitted my shenanigans four years back.  I was meant to be somewhere, and I wasn’t.  I learnt from my mistake and ever since that day I have MUCH respect for all the work they do.  In a busy shift it must be stressful and bewildering trying to get up to thirty people maximum in various capabilities to and from their destinations.

Towards the end of my shuttle lift he asks,

Do you want to hear the funniest story that happened a few years back?

His story was a funny and one he repeats with glee, but no names or exact locations are given.  Long story short a patient got mixed up and ended up thinking the airport was the hospital.  In fairness they had an eye problem and could see the funny side of it but not something they would admit to others back home.  Despite that the person in question got to their appointment in time and got home with humorous embarrassment.  

I thanked the BRC driver and hope he had a good day and that no more folk just walk pass him when he is only doing his job!

My acknowledgments and thanks to BRC Press for the logo and weblinks and the BRC drivers of Aberdeen City and their fab work with NHS island patient travellers.  http://www.redcross.org.uk/  Images see Welcome to…page(:

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My Secondary Lymphoedema or as I call it legoponics

Hello and welcome to my first blog post from the wintery island of Shetland.  This is my story based on facts with some reflective poems.

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What is Lymphoedema?

Firstly, in the United Kingdom Lymphoedema affects up to a quarter of a million people but globally the figure is in its millions.  Lymphoedema occurs when the lymph nodes become blocked or are removed from the body.  These lymph nodes are found under the arms, neck and groin areas. The lymphatics are often described as the plumbing system of the body and that its main job is to fight off infection in the body defence mechanism.  I specifically have ‘Secondary Lymphoedema’.  The ‘secondary’ part means it was not cancerous and it is either caused by an infection, injury, part of cancer treatment, inflammation of the limb, or a lack of limb movement.

I visualise my limb disability using the metaphor of ‘hydroponics’. Hydroponics is a water circulatory system used in botanicals to grow plants without soil.  Since, it is essentially my leg limb that is affected I just put the two together and called it legoponics.  The reason why I did this is because I get fed up telling people what the word ‘Lymphoedema’ means.  Their eyes glaze over or, it feels like it goes in one ear and quickly out the other.  It isn’t in simple layman or laywomanterms.  It is medical jargon best kept for those that understand this type of terminology.

Leg-o-ponics’, at least gives an idea to what is wrong with the ‘water works’ in my leg.  A visual ‘H2O’ hint

If others cannot still understand then at least I have tried my best to uncomplicate this word ‘Lymphoedema’.

In this legoponics blog I aim to write in a frank and open narrative. Importantly, I aim for this personal account to help others with secondary lymphoedema who may feel at times vulnerable, alone or struggling with this condition.  

To ‘help inform and raise awareness’ from a personal perspective 

I have source material mostly from my reflective journal entries from 2013, my artwork, photos and notes from a mobile app.  Lastly, in some parts I have added my poems to help convey my emotions to help navigate the narrative.

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‘Strange Boots’

It was Christmas day 2013 when I first noticed something was odd.  This oddity and strangeness appeared when I was putting on my sheepskin lined winter boots.  I was getting ready to drive and spend Christmas with my family.  My whole right lower shin was completely snug into my knee length boot.  However, the top of my left boot was loose by a one-centimetre concentric gap.  I wasn’t immediately concerned as distracted by Christmas day preparations.  I never viewed this as a major threat to my health or life as there was no pain; just a minor discomfort.  

Unknown to me at the time this ‘strange’ and subtle change was the beginning of a whole new life path

Ironically the little labels stitched onto the sides of each boot said ‘Strange’.  I loved wearing these boots as they were unique and fashionable for wintertime.  They were leather with a specialist distressed look; almost a crackle effect.  They looked good with black or blue denim jeans or skirts and they felt so cosy on a cold winters day.  It took me two years to get around to wearing them.  Still in their original box they were an expensive impulse buy.  In total I got to wear them for three winter seasons and Christmas 2013 was sadly the last.  Reluctantly in late 2014 I eventually sold my strange boots on eBay.  It wasn’t the only shoe or boot grief that I had to succumb to; there was more to follow in its footsteps.  No more heels, ankle or welly boots.  In terms of clothing no more skinny jeans or anything that constricted my lower half of the body.  Like any lymphie fashion the more elastic and stretch the better!

Skinny Black Jeans’
the other day in town
I saw a stranger walk
down da street
she wore skinny black jeans
and black leather boots
it occurred to my memory
my once narrow pins
were clad in similar attire
they looked exactly like hers
a flash back to the past
only thinking of errands to complete
with no mind of any walking obstacles
now I must look where I am walking!
pavement slabs, concrete kerbs
wet tarmac, and uneven tracks
the everyday mundane underfoot
it now holds my attention
I don’t miss skinny jeans
I have boot cuts jeans instead
elastane stretched preferred
or leggings with wide calf boots
with knee length dresses or skirts
I have moved on
from skinny black jeans

@legoponics Winter 2017

I learn since my diagnosis in 2014 that ‘comfort’ comes before fashion. More importantly I cannot afford to impulse buy and let shoes live in their boxes anymore.  

I feel every woman or man has at one time bought an item of clothing or footwear and thought, ‘yeah I can wear this somewhere, with something?’ ‘but!’ when is another thing

Fashion guilt purchases yes! I am guilty of these.  Presently, everything I buy must count and take on a more practical common-sense’ approach.  It is a far removed from the glamour of catwalk fashionista narrative.

Presently, clothes shopping takes on a new meaning for me.  In the past I could pop into a clothes shop and buy items without thinking of looking at the labels to see if it is elasticated or not.  I must now carefully select items and then check each label ‘one by one’.  I mentally question every item and ponder

‘What is the pe rcentage of elastane?’ or, ‘is it going to fit, stretch, reveal, hide or look strange on my leg or body?’

Due to living on a Scottish island with less shopping choices I prefer like many to buy online or visit the mainland.  Sometimes I visit second-hand shops and still come across a bargain or items to accessorize.  I love clothes shopping but now I must plan how long it takes to go from A to B in terms of travel planning. On a good day I get everything done. On a bad day I cancel: I can’t face the journey ahead of me.  So far in 2018, most days are good.

‘Diagnosis’

From February to August the 1st of 2014 was the medical time scale of how long it took to fully understand what I had.  

An unanswered question popped up in my head, perhaps my location didn’t help? living on a Scottish island?  The fact was it wasn’t a recognisable health condition and left all medical staff on the island puzzled?

It was on the mainland Scotland that I eventually got a name to my health problem.  I am grateful to all medical NHS staff on the island and the mainland who did their best to find a solution.  However, in hindsight from what I have experience there needs to be more awareness of this ‘subtle and painless’ health condition.

One lady I met in 2015 didn’t get a diagnosis for over a decade she thought she just couldn’t lose weight in her teens.  

There are a few stories like this found by reading personal accounts on the internet a ‘common delayed diagnosis

I sometimes wonder if both my legs went large at the same time I wouldn’t straight away think it was a medical issue!  Depending on your age group it could be easily dismissed as weight gain due to diet and lifestyle, or the menopause or the expected middle-aged spread. My account is from a female perspective only and I cannot comment on what it is like for men but there might be some similarities like diet and lifestyle causes.

In the whole of February 2014, the initial sign for me was having one ankle consistently more swollen than the other.  Since that Christmas day warning in 2013 I never worried as it disappeared the next day. Even now each morning after sleeping the swelling goes down and the ankle is near normal looking again.  It has a pattern like the oceans on earth: a low tide and a high tide.  It has very subtle warning signs; just silent tidal movements.

‘Wilderness’

Before I went to my doctor in the last week of February I had one dramatic and painful incident.  It is maybe connected to my Lymphoedema from a walk I did on February the 1st 2014.  This walk took place on a secluded beach in Northmavine, Shetland accompanied by my daughter.  I remember it being a sunny and fresh day with a pale winter sun that set early afternoon.  To catch the best of this winter sun was to hit the road and drive somewhere not too far rather sooner than later.
My daughter and I walked slowly down to the beach.  

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It was a great way to clear away the cobwebs and start afresh for 2014 or so I thought!  At the end of the walk both my daughter and I got our feet waterlogged.  Both trainers and wellies alike were filled up with freezing seawater.  We both got carried away running in and out of the surf and getting chills off the waves hitting the isolated beach again and again.  Soon it was all over, and we were home, warm and dry while the winter sun set behind the black shadowed hills.

The following day after sunrise, I tried to get up out of bed but couldn’t move.  An intense pain from my kidney area seared my whole being. I cried out for help.  My daughter came running anxiously waiting for me to say something.  The pain had its say first and I had no choice but stay still and listen.  For twenty minutes intense hot and then cold stabbing pains took their turns to play its dark tango with my hypothalamus.

‘What is going on?!’, I screamed in my head.  Eventually, a state of calm descended, and the deadly tango started to go at a more sedate pace

Eventually I rang a NHS 111 helpline and was told to go to see my doctor.  Thankfully, since that morning I have not had any repeats.  At the time I was just grateful my daughter was staying over that weekend and was there to help.

Strangely it wasn’t this painful one-off incident that prompted me to see my doctor; only the consistent swollen ankle.  I felt something was very wrong when this swelling was not going way and there was no recent injury.  I phoned up the doctor and got a routine appointment on that same day.

‘Process of Elimination’

The appointment became more urgent than routine when my doctor extended more time to investigate further.  I was there for forty-five minutes when bloods were taken.  I walked out with an urgent referral.

Journal entry 28th of February 2014 Hospital investigation.  Spent six hours in A&E. Saw doctors and nurses, which took a long time; a process of elimination.  Last piece of investigation of the day was in the X-ray department for an ultrasound for my upper abdomen and pelvic area.

The following are questions I was asked: any trauma to leg area; any travel to exotic countries to rule out any insect bites; recent surgeries in the last few years.  Family history of clots; contraceptive methods; IV drugs injected?  I did have mandatory immunisations in late 2013.

Once all the above tests were completed and the results were normal, deep vein thrombosis was excluded.  It concluded that a Lymph node biopsy was to be performed soon in the beginning of March.  During the biopsy I was awake.  I could feel the stitches.  This made me glad that I could talk to the anaesthetist and request more painkillers.

I was discharged later in the day and I was waiting to get picked up outside the hospital.  I was not in any state to drive thirty miles home. My friend took the wrong turning and drove over many speed bumps, we started giggling at the hilarity of it all.  Each speed bump induced more giggles and so the amusement went on.  Eventually I arrived home bump free.

On a later date of 18th of April 2014 my doctor was updated about my lymph node biopsy.  In conclusion I had normal lymph nodes and x-ray on my back tested normal.  In time after the operation I did feel my leg become a bit swollen.  It was noted my leg measurements had a three-centimetre difference.  The next hospital investigation was to do a MRI scan on my pelvic area to be conducted on the mainland.  All travel arrangements were made, and I did a one-day journey and returned the same day.

It was into late June 2014 my MRI scan results showed no other signs of any abnormities.  It was concluded there was no reason given to how or why I had lymphoedema.  It was puzzling to my consultant.  She seemed mystified as to why I had this problem.  However, the next step was to give me the long-awaited answer.

It was a beautiful morning on the 1st of August 2014 I was told I had Secondary Lymphoedema: it was for the rest of my life

I remember after my first visit I had panicky feelings.  It was all unknown and I did my own research.  I read everything I could find online and started getting confused with the differences between Lymphoedema and Lipoedema.  It took a while to really understand what Lymphoedema was and how to live with it.

‘The Lymphie Support’

The best advice I received in the United Kingdom was based in London, ‘Lymphoedema Support Network’. http://www.lymphoedema.org

I rang them up and relayed my first initial fears.  They offer an excellent listening ear and were very helpful!

They gave me advice and information leaflets.  The membership fees are low, and you can get informative magazines four times a year.  I purchased a medical alert card from their online shop.  It is useful for employment and if you are going into hospital.

Other helpful advice I have received since 2014 are Clan Cancer Support based in Shetland https://clanhouse.org/local/shetland/ and MacMillan https://www.macmillan.org.uk/information-and-support/coping/side-effects-and-symptoms/lymphoedema they have a free contact number.

After four years of being a Lymphie I am ready to share my journey.  I hope that my blogging shall help raise awareness of lymphoedema and wellbeing and more besides.   Thank you for reading x

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My-Secondary-Lymphoedema-or-as-I-call-it-legoponics

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