A slightly different tone of post for me but when it comes to Lymphoedema there can be moments of sheer frustration and a lot of the time things are not very straightforward – so I thought I’d do a wee bit on that. (I have used the fish tank photo on this post for a nice calming effect!).
For a start we still don’t know how or why Lucia has the condition, why she has good days and not so good days, why her swelling can fluctuate so much or even how her legs and feet really feel to her. I think that is one of the toughest things for me – not having a clue how it physically feels for her. However, over her four little years we have learned how to try and navigate these moments as best we can and give her the best care we can, including the moments when we meet medical professionals who don’t have much of a clue about the condition.
A few examples:
The first time was when a paediatrician sent us home when Lucia was only a few months old telling us it was ‘just’ Lymphoedema and no advice on what we should do because he didn’t know.
Then, at one of Lucia’s appointments for her vaccinations I had to tell the doctor not to do the injections in her legs and explained why. However, the doctor tried to insist that it would be absolutely fine – to which I disagreed and firmly stated that no needles would be put into my baby’s legs and that was that. She got them in her arms instead.
Lucia recently had her four year check-up where I was asked, ‘does Lucia STILL have…’. She found it difficult to say ‘Lymphoedema’ as she’d probably never come across it before, so I helped her out with the word and said yes, it is a life long condition and that we see a specialist every month.
My current frustration though is compression garments. We have been working pretty constantly with Lucia’s therapist to try and get things sorted (I think we are her worst nightmare at the moment!) but we just haven’t got there yet. Someone commented on a previous blog post that it took them 15 years to get the right garments and the right fit and I am really hoping that won’t be the same for us!
Lucia is currently wearing garments that are about 9 months old and pretty much useless. They are full of holes that have been repaired so many times I have lost count and new holes are appearing almost everyday through wear and tear. Bearing in mind she usually gets new garments approximately every three to four months you can understand where we are.
The company that we have used up until now just haven’t been making suitable garments for us since January of this year. We aren’t sure exactly what the problem is but not one pair we have received since the start of the year has been wearable – with some even pushing the fluid down and making her swelling worse. We are now trying a couple of other companies and hoping something will meet her needs in terms of fit, comfort and style. And this needs to happen sooner rather than later as she desperately needs new garments and I want them sorted for her starting big school in September.
Swelling up, swelling down
We also need them sorted because her most affected foot, ankle and leg (her right) has been fluctuating quite a bit in terms of swelling lately. There will be days when her swelling goes up for no apparent reason and days when it goes down – but we have no idea why. It particularly affects her little foot which can feel so thick and heavy at times, her converse can be hard to get on and stay on and her little toes also hold so much fluid. Her ankle also gets very puffy and it can be difficult to try and get this fluid on the move again.
So our compression hunt is continuing and to add to this we are also now thinking of looking into toe caps as well – which quite frankly scare the life out of me. When we first started looking into compression I remember coming across a photo of a person wearing thick, ribbed compression complete with toe caps and I cried at the thought of my baby girl having to wear them. They also looked so uncomfortable and I can’t imagine Lucia even allowing us to put them on – and she can be one very stubborn girl.
But we have to think of the condition and how we can manage it to the best of our ability. And compression is such a vital component of that management so we need to just find what works for her.
So while we wait to discover some new compression we are occasionally using a type of punched kinesio tape on her foot and ankle, under her current garments which does work quite well – when she lets us put it on. She absolutely hates getting it off so we don’t get to use it as much as we would like (see the stubborn comment a few lines above!).
Keep on going!
I feel like I’ve been a bit waffly in this post but my main point is the frustration that comes with this condition in a variety of forms and how nothing is straight forward and easy. But, as always we will get to where we need to be and will keep going until we do.