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Have just seen my lymphoedema physio who I've been visiting for the past few years and who has been helping me manage my lymphoedema pretty successfully up until now. When I w...","body@stringLength":"1129","rawBody":"Today is not a good day. Have just seen my lymphoedema physio who I've been visiting for the past few years and who has been helping me manage my lymphoedema pretty successfully up until now. When I was first diagnosed with lymphoedema, it was towards the end of my treatment and I didn't take it too well as it felt like the last straw, particularly after such a long ordeal. Today, I was right back in that head space as I was told that despite my wizz-bang new (and expensive) compression sleeve and regular lymphatic massages my measurements are getting worse and so the next step will be some heavy duty bandaging to try and regain the shape and size my poor arm should be. I know in the grand scheme of things it is not the worst news I could receive but that didn't stop me bursting into tears. I'm just so sick of the constant reminders and the seemingly never-ending side effects that erode any shred of self-confidence I might have. Thankfully my physio is a beautiful, sympathetic soul and seems to be pretty confident that the bandaging will make a difference. I really hope so.
Thanks for listening. Jane","kudosSumWeight":0,"postTime":"2016-10-31T19:53:23.000-07:00","images":{"__typename":"AssociatedImageConnection","edges":[],"totalCount":0,"pageInfo":{"__typename":"PageInfo","hasNextPage":false,"endCursor":null,"hasPreviousPage":false,"startCursor":null}},"attachments":{"__typename":"AttachmentConnection","pageInfo":{"__typename":"PageInfo","hasNextPage":false,"endCursor":null,"hasPreviousPage":false,"startCursor":null},"edges":[]},"tags":{"__typename":"TagConnection","pageInfo":{"__typename":"PageInfo","hasNextPage":false,"endCursor":null,"hasPreviousPage":false,"startCursor":null},"edges":[{"__typename":"TagEdge","cursor":"MjUuMnwyLjF8b3wxMHxfTlZffDE","node":{"__typename":"Tag","id":"tag:lymphoedema","text":"lymphoedema","time":"2025-03-25T05:01:55.402-07:00","lastActivityTime":null,"messagesCount":null,"followersCount":null}}]},"timeToRead":1,"currentRevision":{"__ref":"Revision:revision:46390_1"},"latestVersion":null,"metrics":{"__typename":"MessageMetrics","views":283},"visibilityScope":"PUBLIC","canonicalUrl":null,"seoTitle":null,"seoDescription":null,"isEscalated":null,"placeholder":false,"originalMessageForPlaceholder":null,"messagePolicies":{"__typename":"MessagePolicies","canModerateSpamMessage":{"__typename":"PolicyResult","failureReason":{"__typename":"FailureReason","message":"error.lithium.policies.feature.moderation_spam.action.moderate_entity.allowed.accessDenied","key":"error.lithium.policies.feature.moderation_spam.action.moderate_entity.allowed.accessDenied","args":[]}}},"archivalData":null,"customFields":[],"body":"Today is not a good day. Have just seen my lymphoedema physio who I've been visiting for the past few years and who has been helping me manage my lymphoedema pretty successfully up until now. When I was first diagnosed with lymphoedema, it was towards the end of my treatment and I didn't take it too well as it felt like the last straw, particularly after such a long ordeal. Today, I was right back in that head space as I was told that despite my wizz-bang new (and expensive) compression sleeve and regular lymphatic massages my measurements are getting worse and so the next step will be some heavy duty bandaging to try and regain the shape and size my poor arm should be. I know in the grand scheme of things it is not the worst news I could receive but that didn't stop me bursting into tears. I'm just so sick of the constant reminders and the seemingly never-ending side effects that erode any shred of self-confidence I might have. Thankfully my physio is a beautiful, sympathetic soul and seems to be pretty confident that the bandaging will make a difference. I really hope so.
Thanks for listening. Jane"},"Conversation:conversation:46390":{"__typename":"Conversation","id":"conversation:46390","solved":false,"topic":{"__ref":"ForumTopicMessage:message:46390"},"lastPostingActivityTime":"2016-11-12T20:39:30.000-08:00","lastPostTime":"2016-11-12T20:39:30.000-08:00","unreadReplyCount":25,"isSubscribed":false},"ModerationData:moderation_data:46390":{"__typename":"ModerationData","id":"moderation_data:46390","status":"APPROVED","rejectReason":null,"isReportedAbuse":false,"rejectUser":null,"rejectTime":null,"rejectActorType":null},"Revision:revision:46390_1":{"__typename":"Revision","id":"revision:46390_1","lastEditTime":"2016-10-31T19:53:23.000-07:00"},"ForumReplyMessage:message:46394":{"__typename":"ForumReplyMessage","id":"message:46394","conversation":{"__ref":"Conversation:conversation:46390"},"author":{"__ref":"User:user:651"},"revisionNum":1,"uid":46394,"depth":1,"hasGivenKudo":false,"subscribed":false,"board":{"__ref":"Forum:board:side-effects"},"subject":"Re: Lymphoedema Blues","readOnly":false,"editFrozen":false,"moderationData":{"__ref":"ModerationData:moderation_data:46394"},"parent":{"__ref":"ForumTopicMessage:message:46390"},"body":"Oh Jane,
I so can relate to your post and am right there with you. It is such a shock to have had it all under control and then it just goes pear shaped, often for no apparent reason. I had exactly the same reaction as you when I was first told mine was playing up again. I kicked and screamed and cried for a while and refused to acknowledge that I needed to go back into my long garment at work. I nearly drove myself mad with reasoning why, why, why this was happening after being in control of my lymphedema for so long. Then after all that anger and denial I did settle down, and like we often have to do with this rotten disease I reached some form acceptance and got on with the job. You will get to that point to and get into the bandaging, you just need to process and have a cry for a bit first (you're entitled to that). Then it will be head down, bum up and lets just do this bandaging and get on with things. Bandaging can be challenging, although I have heard it is not nearly as bulky as it was a few years ago so I hope that is the case. It can be very effective and quite quickly, just a bit of a pain. I bought one of those plastic things that people in plaster casts wear over their casts in the shower and it was brilliant. After a while I got used to the bandages. They will help. Sending you the biggest cyber hug. Paula xxxxxx","body@stringLength":"1493","rawBody":"Oh Jane,
I so can relate to your post and am right there with you. It is such a shock to have had it all under control and then it just goes pear shaped, often for no apparent reason. I had exactly the same reaction as you when I was first told mine was playing up again. I kicked and screamed and cried for a while and refused to acknowledge that I needed to go back into my long garment at work. I nearly drove myself mad with reasoning why, why, why this was happening after being in control of my lymphedema for so long. Then after all that anger and denial I did settle down, and like we often have to do with this rotten disease I reached some form acceptance and got on with the job. You will get to that point to and get into the bandaging, you just need to process and have a cry for a bit first (you're entitled to that). Then it will be head down, bum up and lets just do this bandaging and get on with things. Bandaging can be challenging, although I have heard it is not nearly as bulky as it was a few years ago so I hope that is the case. It can be very effective and quite quickly, just a bit of a pain. I bought one of those plastic things that people in plaster casts wear over their casts in the shower and it was brilliant. After a while I got used to the bandages. They will help. Sending you the biggest cyber hug. Paula xxxxxx","kudosSumWeight":0,"repliesCount":0,"postTime":"2016-10-31T23:41:15.000-07:00","images":{"__typename":"AssociatedImageConnection","edges":[],"totalCount":0,"pageInfo":{"__typename":"PageInfo","hasNextPage":false,"endCursor":null,"hasPreviousPage":false,"startCursor":null}},"attachments":{"__typename":"AttachmentConnection","pageInfo":{"__typename":"PageInfo","hasNextPage":false,"endCursor":null,"hasPreviousPage":false,"startCursor":null},"edges":[]},"timeToRead":2,"currentRevision":{"__ref":"Revision:revision:46394_1"},"latestVersion":null,"metrics":{"__typename":"MessageMetrics","views":0},"visibilityScope":"PUBLIC","isEscalated":null,"placeholder":false,"originalMessageForPlaceholder":null,"messagePolicies":{"__typename":"MessagePolicies","canModerateSpamMessage":{"__typename":"PolicyResult","failureReason":{"__typename":"FailureReason","message":"error.lithium.policies.feature.moderation_spam.action.moderate_entity.allowed.accessDenied","key":"error.lithium.policies.feature.moderation_spam.action.moderate_entity.allowed.accessDenied","args":[]}}},"customFields":[],"replies":{"__typename":"MessageConnection","edges":[],"pageInfo":{"__typename":"PageInfo","hasNextPage":false,"endCursor":null,"hasPreviousPage":false,"startCursor":null}}},"CachedAsset:theme:customTheme1-1743643614981":{"__typename":"CachedAsset","id":"theme:customTheme1-1743643614981","value":{"id":"customTheme1","animation":{"fast":"150ms","normal":"250ms","slow":"500ms","slowest":"750ms","function":"cubic-bezier(0.07, 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