So, if you've followed this blog for a while you might recall about 3 years ago I pulled a teeny tiny hang nail on a toe of my right foot.... and 24 hours later ended up seriously ill with cellulitis... my doctors gave me antibotics but the swelling in my leg caused by the infection never went down, and it was eventually decided that I'd probably got lymphodaema....I got a referral to a specialist lymphodaema nurse who is part of the McMillan Nursing Service (as lympodaema is most commonly associated with post surgery for cancer).
Anyway.... fast forward three years and I am at my wits end.... in that time I've seen my nursing specialist only a handful of times (not her fault, the service is a charity, and the lymphoaedma service is very poorly funded, with only one specialist for the whole of the county). My own doctors is about as useful as a chocolate teapot.... seriously, one time I went to the doctors three times in one week and saw three different doctors none of which were my own.
For three years I have battled on my own, with only a pair of bondage stockings (okay, pressure garments) which I wasn't told should have been replaced ever 3 - 4 months. But I couldn't wear them anyway as I had a sore patch on my leg.......
I was starting to get horribly depressed about my leg.... the main feeling being I'd like to take a chain saw to it at the knee and get rid of the thing totally - seriously it's like having an elephant's leg attached to my knee.... anyway, with some prompting from my counsellor (who had other evil ideas about me looking at it for 10 minutes a day and thinking about how I feel about it...... seriously with the chainsaw...) I phoned the specialist nurse with a plea for help....... she was off sick and I saw a stand in who didn't know what to do with me..... but thought she might no someone else who might......
As a result, I had a referral to the leg clinic.... I first went back at the end of April..... and they ummed and ahhed over my leg... then suggested I could take 4 weeks off work and go into a nursing home on bed rest with my leg elevated...... when I pointed out to them, hello full time job, 4 dogs, 2 cats, no one else at home, get a grip... they agreed to try something else.....
So, yesterday I pottered along after work for my first session of wrapping.... the idea being basically to squeeze the hell out of my leg till the fluid has no option but to bugger off elsewhere...
What they do is put on a layer of padded bandages, then another layer, then another... then top it all off with conforming bandages...... essentially it's like having a plaster cast on the lower half of my leg (my toes poke out - I may paint my nails)... but the cast is soft and I can walk on it, and drive, and basically carry on as normal (except for the whole point and laugh thing by small children who don't understand and whose parents are too fucking numb to tell them that it's rude to stare/point/laugh)
Today I had the first wrapping taken off, and the leg has shrunk quite a bit, but the bandage slipped so when today's went on... it's gone on lots tighter and higher, I can only just bend my knee. But hopefully it will work. If they squeeze enough out on Friday when they take off the wrap then they will measure me for more bondage stockings - only these will be higher strength and will be replaced more frequently.
Anyway, the upshot of all this is that I am feeling all over the place at the moment.... I want to be treated to help my leg, but wish to hell this had been addressed three years ago when it all kicked off. It's not something I will ever recover from - I will live with lymphodaema for the rest of my life - but hopefully we can get it all to a manageable level....
I can only imagine how frustrated you must be that it wasn't dealt with properly 3 years ago. (Also, it's been 3 years already?!??! YIKES.) But! Things sound like they are So. Much. Better. than they were, which is A. Very. Good. Thing. Indeed. I am glad you are getting treatment that is working. *HUGS*
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