Wednesday, 20 November 2013

Getting Diagnosed.....

I was always a big child from a family of relatively slim people. I was a little greedy perhaps, but no more than any other child. I remember being called 'tree trunk legs' by a horrible boy when I was about 11, he was pretty spot on.

I was diagnosed with lipo-lymphedema (I'm from the UK so we spell it a little different) in Sept 2011 by Professor Peter Mortimer, the leading UK specialist. I had paid for a private appointment after spending the previous year on a new diet and fitness program & working with a hypnotherapist. Part of her work included dealing with food issues and triggers, and some counseling. She was upset to see me so incredibly happy in my life, except where it came to my legs. I had spent many an appointment in tears over my legs, feeling like I looked a freak, re-living hurtful remarks made by people including my family. I said I was sure I knew what I had so she pressed me to get some help and found a MLD therapist for me in my local area.

I went to see Lucinda Careswell and she immediately confirmed I had lipo-lymphedema. She initially started a program of MLD and we then went on to a week of bandaging. Boy, that was painful! It felt as if my skin was going to fall off & I was exhausted because I wasn’t sleeping! But at the end of the week I could see a real difference. I continued with MLD on a weekly basis. My big & hard legs were softening up and I stopped feeling that completely stretched, ‘oh my God, my skin is going to split’ feeling quite so often. My mother even sent me a clipping from a national newspaper who did a double page spread on lymphedema, as if it wasn’t something I’d been telling her about for such a long time. Maybe she finally understood?

I then decided to make an appointment with Peter Mortinmer to see if I could get a diagnosis and see what sort of help I could reasonably get. I was amazed how easy it was for me to just book it! After making the appointment I was quite scared. What if I wasn’t ‘ill’ and if I was just fat? How ridiculous would I look then!? But when they day came and I went to the appointment within 10 mins or so of an examination and a brief bit of family history Professor Mortimer confirmed my diagnosis of lipo-lymphedema of my thighs and my calves area.At this point I had lost about 4 stones in weight. He advised me to be careful about losing too much weight as it was important to keep a balance between the top half and the bottom. No other medical professional has ever said, ‘don’t lose weight!’ before. It was such a freeing experience to actually know that it wasn’t my fault. I felt as if a weight had been lifted off my shoulders.

Some years previously I had been to see my Drs because I was worried about my legs. They didn’t seem to be the right shape especially for an overweight person. Obese people do not have fat calves! Various doctors in the surgery prodded and poked my legs and had no idea but one Dr did a bit of research & booked an appointment for me to see a lymphedema specialist at Guys & St Thomas’s Hospital in London.

At the appointment the Consultant said that even though I had pitting he didn’t think I had lymphedema. He said he heard of some research happening at St George’s Hospital in Tooting about a genetic fat problem but personally he didn’t believe in it. When I said that I had problems losing weight he said that he was sure that if I’d been in a concentration camp in the war then I’d have no trouble losing it! How ignorant! How rude! How disrespectful!

I made a formal complaint about him and I did get some sort of apology from the NHS who said that his comments had been taken out of context. Disgraceful is what I call it! Professor Mortimer knew exactly who this man was. Other ladies had encountered him and similar nasty comments had been made to them. I’m sure what sort of person who is supposed to be in the caring & healing community could make those types of remarks, and no doubt worse.

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