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Few months later, I had the CT scan but on the follow up appointment, Michael had been replaced by an Asian guy who was not aware of my case and did not really examine me.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...
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...
posted by Tania at 11:50 AM
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