Lymphedema news

Hi, long time no update. Well, I finally saw the LE specialist at St George's in Tooting. She confirmed that I have LE in feet, legs, and belly. Said we'll have to do intensive treatment (i.e. wrapping) for one week, Mon-Fri. She referred me to an endocrinologist to check me out for Cushings syndrome but no sign of an appointment, yet. All I know is that I am going to clinic end of May to be measured for garments. My understanding was that I would get to see the specialist nurses who would wrap me up. I don't know what is happening. Must ring and clarify. As for MLD, the therapist never rang me back as promised. Maybe for the best, as each treatment is £70! And that is to go to the hospice, not to have it done at home...

I am doing alright with my calorie counting. Losing on average 1 lb a week. There is no hunger or strain involved. I eat everything I want but I have cut out all takeaways, deliveries and ready meals. I have cut down on salt as I have discovered that it swells me up and have cut down on MSG (soy sauce mainly but lots of other foods where it is hidden, like commercial Caesar dressing, for example.) I am trying to eat as natural as possible and to cook from scratch when I am able to. I even made my very own chips by microwaving cut potatoes for 5 mins at full and then frying them in hot oil. They ended up fluffy on the inside and crispy on the outside. No need to parboil and cook in batches and then recook. 

Sometimes my brain finds solutions that no one else has thought about just by processing available information. I am hoping that my brain will come through for my LE treatment. I would like to help other people achieve their health goals and lead better lives.

Still here!

I used to update this blog often, then life got in the way... I am still around, in case you were wondering. I now weigh 192.4 kgs and have been diagnosed with bilateral leg lymphedema. My GP does not care - she thinks it is just desserts for someone fat as me.

I am not sure when it became a problem but I recall going on holiday with my ex and seeing my reflection in the disabled toilet's mirror. My calves were double the size of my thigh. I recall telling my ex that there must have been something wrong with this mirror... was it a trick mirror? He assured me it was not and that my legs had been this way for a while. Imagine my surprise! Did it not occur to him to say something at any point?

When we visited the GP to ask for help, she shrugged. She said it is lymphedema and there was no cure. Did not give us advice on how to handle it, nor a prediction for the future. Eventually, few years later and after a lot of moaning at different GPs in the surgery, I got promised to be referred for pumping therapy (they use some sleeves they put your legs in and they pump air to try and push the swelling back up where it can be eliminated by the body. Guess what? Nothing happened, despite me reminding them often. So I complained and then I was referred to vascular surgery.

I was so looking forward to that appointment! But they kept cancelling and rescheduling and that went on for months. When I had about 6 cancellations/reschedules, I rang to complain and was told the clinic was oversubscribed and they did not have enough doctors/nurses to run it safely so they kept cancelling it! Eventually I got seen by an East European doctor, Michael was his name if I am not mistaken. Lovely chap. He was rushed off his feet and a bit disillusioned with the medical establishment in the UK. I understood when he had come for an interview and seen the modern building, he had imagined things to be running smoothly in an idyllic way...

Michael referred me for a CT scan to see if there was any underlying reason my legs were so swollen. It would have been a CT scan from legs to abdomen. Somehow this became a CT scan of the pelvis and abdomen. I asked for the chest to be included as I had been having wheezing for a while and it began after I had to stop taking warfarin for a few days due to an impending operation that never happened. (I'll explain more later.)

Few months later, I had the CT scan but on the follow up appointment, Michael had been replaced by an Asian guy who was not aware of my case and did not really examine me. There was no measuring of my swelling, no touching, nothing. He had no idea about CT scan as the results hadn't been reported, yet. From inside the same hospital... fifteen days later, yes, believe this! He had no idea about the lymphedema massage that had been requested for me and after I insisted for 10 minutes, he searched my records carefully and found the referral and said he would write again to the hospital to remind them I hadn't had the appointment yet. The shoes that Michael had referred me to were a no go as the Appliances Office does not take referrals from vascular surgeons for footwear and any way it would take at least 6 months to create a pair of velcro slippers for me - nothing for the harsh winters in England! WTF?!! So no shoes, no massage, no results from CT scan that would inform my future care plan...

Bit later the secretary that I was so relying on left the unit and the new secretary did not even bother to respond to my email. So I am waiting... and meanwhile the lymphedema has progressed to the back of my knees which feels like having two melons attached. It makes the bending of knees difficult and painful and forget about sleep. I don't know what sleep is any more! GP saw the swelling, pain, redness, rash and did not suspect it is also lymphedema but said she'll refer me for ultrasound in case it is a cyst. Five weeks later I went to have my ultrasound (yes 5 weeks!) and it affirmed my suspicion about lymphedema. I even saw it on the screen. So now what? Wait till summer to get another compression stocking fitted? From a department that is not there to treat lymphedema and admits they have limited knowledge of the disease? The Appliances officer told me to go privately and waste no more time. I have gotten in touch with a MLD therapist - they are the ones who are trained to massage legs in such a way as to push lymph away. I joined a group on FB which has given me invaluable support and information. I know what needs doing now. It is just a matter of money and perseverance.

I know that the operation that did not happen was due to the lymph nodes getting infected and were leaking lymph for months before the skin healed and it stopped. And I know the pain in the left armpit which made me fear for cancer of the breast was nothing more than swollen lymph nodes each time I get an infection (cellulitis in my case). 2+2=4. Simple maths. But maths the doctors are unable to do.

I am so disillusioned by the medical profession! And if I hear any more comments about my weight and the miracle solutions of weight loss surgery, I swear I will attack the person making those suggestions! I wish I never had a caesarian which I blame for the onset of lymphedema which was misdiagnosed as blood clot and has landed me in warfarin (blood thinning drug) for so many years.

Anyway, enough moaning. I don't care for anything any more. Just want to get better. I am trying to diet again and have began mild exercise (you'd laugh if you knew how mild but as long as I move a bit more each day it is good for me in the long run.) I have asked if others would like to join me in my effort. Somehow it seems better when you do things with friends. Online friends that is, because I do not have any real life friends left. As for men, I am not interested any more. I tried with the ex, and I failed. I don't believe in love any more. Nobody will love me as much as I can love myself and if I can't take care of myself, I cannot expect anyone else to do it for me.

Hopefully my next update will be brighter. You know me. I fall but then get up and dust myself and continue.

Oh, I have written a memoir about the time I met my husband and the years with him. Now all I need is the courage to publish it on Kindle. Part of me wants to do it, part of me is scared of exposing myself to the world. When I get scared, I say that nobody will read it so there is nothing to be afraid of! LOL  I want people who read it to see a bit of themselves in me and learn from my experiences and realise that we are all human and mistakes are the paving stones to ... enlightenment! That sounds nice, eh? I must copyright it :)

Till later...

Weeping Willow

It's been just over a month since my partner moved out and it's been a roller-coaster of emotions.

Most of the days are OK, I get by, but some days are awful. 

Like yesterday, when he accidentally sent me a text message aimed at someone else. Someone who he was informing he had gotten into work with a half hour delay due to traffic and signed it with XXXOOOXXX. 

I queried of course how come there was so much traffic between his boss's home and work (a 5 min drive) and that is how I found this was a dropped message.

Caught him on SKYPE and gave him a bit of my mind. He began his poor me routine (how he's been ill for so long and needed some space and this was not planned...) I told him I didn't care who he screwed around with as long as he didn't screw my daughter's life. Because that is the big issue. Not me, not him, but an 8-year-old who is suffering with depression and it is beginning to show.

Turns out the other woman is a colleague of his... who for some strange reason did not have to be at work yesterday morning. He is shitting where he is eating and that will be his downfall. But that is not my problem.

My problem is my daughter who wakes up each morning and cries over breakfast, saying she doesn't want to go to school, she hates her life and hates growing up.

He asked me what I wanted him to do. I said 'keep in touch with her, ask her how her day has been, what her plans are.' Do I really need to spell it out to him?

He came into our lives like a hurricane and casually walked out 18 months later leaving us in pieces. How can you become a dad to a child who hasn't had the experience of having a dad at home, how can you get the child addicted to bedtime stories and allow her to feel secure and loved and then just rip everything away and throw a black stone behind you?

I have nothing but contempt for a man like this! 

Mr Right ... not!

My Mr Right... sigh

What can I say? Sometimes things do not work out. 

After meeting him, I began putting weight on again (after the first romantic wave, my appetite came back, not helped by the fact that he loves his food, too, especially fattening things.) 

We travelled to Greece where I overused my knees and when we got back I had severe problems walking. I ended up using a wheelchair with him happily pushing me places. Then I began physiotherapy, got taught to use two walking sticks and after a month of incredible pain (because now I was putting weight on both knees instead of one all these years) my body readjusted and I began moving again (but still use my wheelchair outdoors.)

My weight has been up and down like a yo-yo. When I am feeling well, I lose weight, but when I am stressed, I put weight on. Personal highest achieved this year, I am ashamed to report. :( It didn't help that my stupid doctors put me on Tramadol, a vicious addictive pain killer, which instead of minimising the pain, it made it worse (go figure!) and I spent all winter and spring sleeping most of the day...

My Mr Right had a nervous breakdown due to his work obligations and to caring for me and he still hasn't recovered. His solution to the problems we are facing was to want to move out... I said fine, go! but then regretted it. I can't imagine life on my own again. Right now we are in limbo land, unsure of what the future will bring and taking it one day at a time. However, I am worried because the other day he was quietly crying in bed. This is clearly not good for him so I may have to be strong and let him go. I know I'll survive...

OK, enough with talking about unpleasant things. Let me tell you about my hobby. I decided to embrace my love for food and created a page on Facebook called Shockolata. If you have a spare moment, do drop by and click LIKE if there is anything in it you like or feel inspired from. But please do not call me by name or refer to this blog, as you know... I don't want my entire life becoming public - hope you understand. (It's OK to contact me via a private message, of course.)

I wanted to make a business out of Shockolata, but Mr Right did not allow me. He said it was stressing him too much each time I baked for other people... He may be right because with my mobility problems I am no longer able to do housework, much less wash things up and tidy up after I prepare something. I rely on him and my daughter heavily and sometimes food does burn when they are looking after it. I am not complaining - just explaining that it is hard to do certain things as a disabled person, but I am not giving up.

NEVER GIVE UP, NEVER SURRENDER!

I may not be skinny, beautiful or healthy, but I am still breathing, so there is hope for yet another day. :)

Pleasant Pastures

My dear friends

It's been a long time since my last post and I thought you might appreciate an update.

All is well, I am happy to report. In January 2012 I began calorie watching using an app made by fatsecret.com. To date I have lost just over 10 kgs without depriving myself of anything. My doctor is happy with my progress as losing weight slowly gives the body and mind time to adjust.

A few months later, in May, I met a wonderful guy on a dating site. My daughter took to him instantly. He is also a father which makes things easier. For the first time in my life I've understood that my hunger was emotional hunger - I was craving for love. My boyfriend is fulfilling this need so well that I've had no need for sweets and snacks! I don't know how long this will last but I am enjoying the present.

When I look back at myself, I realise that I have made huge progress in the past 10 months. I've come out of my shell, tried new things like the choirs of which I am a member, overcame my emotional barrier and opened myself up to the world around me and took better care of my health. This has in turn resulted to finding Mr Right when I was not looking.

There is always hope for the future so please do not despair. You too can turn your lives around and achieve your targets. It's never too late!

I wish you all the best from the bottom of my heart.

With love

Eating Disorder Not

So I saw the eating disorder specialist in a faraway North London Hospital and she spent all the time filling in information on her computer only to determine after one pertinent question that I do not have an eating disorder. (The question was 'do you binge eat often?')

My GP began weighing me up and asked me to keep a diary of my eating. Then she sat with me and told me what to swap with what. I did not like lots of her suggestions. She said to buy oily fish like salmon but salmon is too expensive. She said to forget about butter and sugar and use sweeteners instead and she told me to swap 1.5% fat milk with non-fat milk and white bread with brown bread or oats.

I tried to modify my diet and ended up GAINING weight whilst feeling bloated (my body swells up when eating fibres as it cannot break them down.)

The GP said she will re-refer me to UCLH and that their declining me surgery was not good enough, especially since they didn't back their decision up with hard facts. I feel it is a bit pointless to go down that route again but I cannot stop her. I asked her if she can arrange for someone to accompany me to the next meeting with UCLH because I say one thing, they understand another and it would be good to have an independent party present at the consultation but she said 'no, you'll go on your own.'

I feel like a child who's been told off and is about to throw a strop. LOL

Anyway, I have always maintained that the real problem is the lack of sleep but nobody would listen to me. I have read that you should sleep at least 6 hours uninterrupted for your body metabolism to work. I never sleep 6 hours non stop. I wake up 2-4 times in the night for toilet and sometimes I cannot go back to sleep because my brain fills with worries. It's been going on for so long, I have lost track of when it began.

Suddenly, without any prompting on my behalf, the GP decides to put me on a 'mild antidepressant' that would help me sleep, too. It's called Amitriptyline and they give it to children to wet their beds at night. I was doubtful it would have any effect on me but went along as she said it would be only for two weeks and then we'd review the situation.

Guess what? The drug is working. I do get a bit more sleep with the toilet trips reduced to 1-2. Had to take antibiotics, too, because I had a fall which resulted in my foot getting infected with cellulitis. So for two weeks I had to wake myself up twice at night to take my pills. But even so, I managed to sleep between doses - maybe 5-6 hours. At first I was reluctant to wake up in the morning, feeling tired and needing more sleep. I had a couple of migraines, too. My mouth and throat felt dry and painful. Now I am used to the medicine. I take it around 7 pm and by 10 pm I am falling asleep, sometimes even earlier than that.

The increased sleep has given me more energy so I have done more things around the house which I didn't do before, like empty the dishwasher myself and put the dishes away. Or tidy up the living room. Somehow I have also found the energy to walk in the hospital (instead of being wheeled around by a porter) - yes, it is a slow and painful walk, but I am walking the distance. The hospital receptionists keep encouraging me. 'You walking today? Good, good!'

Yesterday I walked in IKEA. It seemed a daunting task. All I wanted was to check out bedside tables as I need one for my daughter's room. I found the quickest route and hurried my daughter along as she stopped by the children's section to test their toys. My biggest problem is standing. I can hardly stand nowadays. I sat down twice to rest. I pushed my endurance limits. Then I almost gave up. I was tired and thirsty and my girl was hungry and thirsty. I thought I'd never be able to face walking through the furniture storage area. I had to drive the car from the disabled parking near the front entrance to the disabled parking near Returns. I thought someone would be kind enough to pick the unit up for me. I even queued up at the café to pick up a couple of hot dogs and drinks. Luckily we got the only two chairs available (IKEA seems to think it OK to make people eat up standing after a gruesome trail through their shop...) An assistant got the piece of furniture for us and put it through the till. He accompanied us to the car. By that time I was trembling and could hardly walk. But it was done. I had achieved my goal. I had the bedside table in the boot of the car! (Pity my strength did not last enough for me to buy the light and picture frames I needed, but never mind, that is for another trip.)

I was surprised with myself. Lately I haven't had much appetite. OK let's blame the antibiotics ruining my stomach. But is it that simple? Or is there a reaction happening in my body involving the part of my brain that controls hunger? In IKEA, I only ate a jumbo hot dog. No soft drink, no ice cream. I drank water. I felt so full from the first two bites. My gastric band is working as it is meant to. I had to eat slowly and put my food down between bites. It is the same gastric band. But I seem to be unable to circumnavigate its controls. Hurrah!

The GP found me to have lost weight. Of course I said it is probably that the scales used are calibrated differently, that the floor makes a difference to the reading and that the previous reading was incorrect as I was swollen - any excuse rather than believe that I have actually managed to reduce my food intake and increase my activity levels.

But I am not an angel, yet. When we got home, I became hungry around 5 pm and ate a couple of sandwich biscuits to stave my hunger. Later on I cooked some chicken livers and rice and had a bowl of food. I had a glass of mixed fruit juice, too. Much later, I finished up the packet of biscuits and ate a chocolate all on my own. That was sheer stupidity. I didn't need it, nor was I hungry. Maybe part of me is scared to give up snacking. Maybe I am testing myself. I wish I could understand me better.

This morning I had my milky coffee with two IKEA cinnamon buns. I cooked more and would have eaten a third one but my facilitator (my daughter) was busy eating her breakfast and I felt too ashamed to ask her to bring me the last bun. It was for the best. I didn't need it. I am full and satisfied. I am glad I managed to resist the temptation.

I must end my confession here as I need to get ready to go out. Some medicines to pick up and a chance to be out in the fresh air for both of us. We would have gone swimming only it is risky as my daughter had fever last night.

Oh yes, I forgot to tell you! I registered for the gym/pool. It is a specialist centre for people with disabilities (but open to able bodied people, too) so much more accessible than other places and only 10 minutes drive at the most from home.

---

To Marci: I got your note, thank you. I have been too preoccupied with things to concentrate on updating my blog, or contacting people via email. It is sweet of you to remember me and care about my progress. I hope you are doing well, yourself. Kisses.

Easter 2011

Was in Greece. My relative took me to see my surgeon for a refill. He gave me 1.5 mls. Got home, burped a lot, and in the night I began having reflux which kept me awake. Got in touch, he said take omeprazole (Losec) and come see me if it doesn't go away. Having no one who could drive me to the hospital and not really being able to afford the taxi fares, I waited for a few days and in the end my friend Dafni drove me there to have a negative adjustment. The surgeon told me he was going to take out 1.5 mls. I argued that this is what he had filled the band with and he said 'no, I had given you 2 mls actually.'

This made me so angry! Why would he do this when all medical literature suggests that adjustments have to be small and gradual? Of course I would have had reflux! But you don't know the rest of the story. When I complained of the reflux, he told me the band must have slipped, come have a gastroscopy (which translates to money). I refused. Then he said that I really ought to have a sleeve gastrectomy (because that is the operation that is fashionable at the moment and of course it would bring him loads of money.)

Anyway, back in the UK now and I can eat as much as I used to eat because in actual fact he's taken away all the fluid he had injected, no matter what he is saying. If he had left me with 0.5 ml, I'd feel the restriction, but I have no restriction.

I was taken for a fool so many times! They don't care about me as a person and my health and happiness. All they care about is money. They are ruthless. I know for a fact that a sleeve gastrectomy would not work on me and it has too many risks to make it the option of choice.

Don't really have much hope for the future. I am meeting a specialist in eating disorders at a hospital in London in June. But time is not on my side.