Tuesday, 4 December 2018
When I started this blog all I was trying to do was raise some awareness of the condition I suffer with, the frustration of getting nowhere with doctors or benefits. I wasn't trying to be anything but me but as time has gone on and the lack of sleep over the last 72 hours has given me the time to ponder trying to take my mind off the fact I can't sleep, with the discomfort I've been having the fact that I've not been able to find comfort has given me time to contemplate what it is I'm willing to do to bring awareness of our condition while remembering the anxiety that lurks in the background. I've been lucky enough to have met some lovely people who in their own way understands chronic conditions and who have been advocates for their own conditions this has given me the drive to do whatever it is I can do for my own. I keep wondering how many people out there suffer from this condition how many people out there that needs a voice to get the condition to be recognised as even though it is said to be a rare condition many people around the world suffer from some form of the condition, but how many people out there are left in the dark by being miss diagnosed by there doctors as I've said many times before the research on the condition is very small and we can't expect our doctors to know everything about all conditions so the big question is how can we spread awareness how can we get help for those who are struggling to get a diagnoses but like myself how can we get people the support and management to control the condition and to answer the many questions we all have.
Monday, 3 December 2018
So today I was lucky enough to get an appointment at the doctors and luckily enough it was with a male even though reception told me there were no male doctors today. So I told him the issues I was having over the weekend and he examined me his reply was that he couldn't see much swelling he also tried telling me my ankles weren't that bad with swelling that's when the research kicked in I explained to him that mine was Primary and that I also knew that there hasn't been very much research done on primary and that GP's aren't given very much training on my condition and although I haven't got very much swelling mine was genetic and my lymphatic system hadn't developed the way it should have. I also pointed out that I can see swelling on my hands and over the course of a week I've put on a stone in weight even though I haven't eaten any more than usual. I also pointed out that I have continued to increase the amount of time I spend in the toilet which could also attribute to more lymph fluid needing to be removed from my body. He asked a few questions then asked why I hadn't gone to see my specialist I replied how can I ask a specialist when I've never actually had one and the nurse I had discharged me 4 years ago as I couldn't wear compression garments any longer. He has told me he will be referring me to another specialist so fingers crossed it isn't long before I see one and in the meantime, it's more research to prepare me for that appointment.
Sunday, 2 December 2018
over the course of the last month, I've been looking at diagrams of the lymphatic system watching youtube videos and reading a couple of books based on the condition. Even though the research I've done has not actually explained what's going on in my lymphatic system the diagrams I've seen has explained a lot.
The books have explained that this condition will need constant management, which I've not had anyone involved in mine for at least 4 years. Luckily for me, I understand the dangers of infection but I didn't really understand why until I started looking at it. for a system in our bodies which in my understanding is the first line of defence against infection, why medical professionals don't get more training to understand this system is a mystery to me. The thing I was never informed when I did get management for it was how the body was able to push the excess fluid around the lymphatic system it uses muscle movement to do this so a moderate amount of exercise would be needed, but how much exercise is enough to keep the swelling down and what garments are most suitable to do this is probably why constant management of this condition is needed to answer these question. looking at the Diagrams and where the main clusters of nodes are situated they are roughly in the same areas as my discomfort is but does this explain the other sensations in my arms and back can the tingling be because of the muscles trying to push this lymphatic fluid around my body or how close are they to our nerves the more I think the more questions I come up with but over the course of the last 48 hours I've had this annoying discomfort in my groin area and I'm not ashamed to come out and say it the testicle area also this has the same feelings as I got in my legs all those years ago so along with the nodes in my neck and groin these sensations are moving I've a feeling this condition can move to other areas of the body but with no proper research how can they disprove me or how can i prove them wrong. There is going to be a struggle to get the doctors to take this seriously as they will more than likely try saying that it will be something else but after 3 years of doing what I've been asked to do, the tests I've had to endure the travel I've taken and the anxiety that its caused when does the time come for me to be firm and get them to take the Lymphoedema seriously remind them that in all there training they are only educated less than an hour on this important system of our bodies