My daughter is studying to become a chiropractor so I try to impress on her an idea that doesn't seem to get a whole lot of air time in educational establishments: the idea that the patient or the patient's carer often know a lot about their own condition and should be valued as a partner in their treatment.
I mentioned my neurological disease a few months ago. The disease causes muscle imbalances, leading to foot deformity. In my case the foot deformity can lead to a pressure ulcer if my foot care and management is not up to scratch.
Earlier this year, as my orthotic and shoes were aging, my foot started to look as though it might ulcerate. The podiatrist pulled some ragged padding from the orthotic and then redesigned the new padding. I really didn't like her doing that as the old one had worked well for a long time.
My foot didn't improve as much as she hoped and so we embarked on a program of extra appointments for me and hand wringing from her. I had an idea of what might help but she was reluctant to do what I suggested and after a few months of this I was on the verge of an ulcer.
By this time I knew I was going to get some new orthotics from a specialised orthotist so the podiatrist seemed to give up, just waiting for the new orthotics. The problem is, my foot needs protection until that time and wasn't really getting enough.
A few weeks along and I had developed an ulcer. I can't tell you the drama these ulcers cause. It's hard to heal them and if they become infected it can lead to weeks of antibiotics and constant medical monitoring. It becomes expensive and a little bit frightening.
The podiatrist wasn't happy with this turn of events and as a last ditch kind of measure she made up a little pad which she taped to my foot with instructions to remove it in a couple of days. Taking the padding off in a couple of days would achieve nothing so I took matters into my own hands and spent the next two weeks taping and retaping the increasingly grubby little pad to my foot.
It did the job and on next inspection my foot was not only all healed but looking better than it had in ages. The podiatrist was stunned and said I had done so well she didn't need to see me for a month. She gave me a new little felt pad which I have now been taping to my foot for three weeks.
In another week or two I'll have my new orthotics and I might be able to forget ulcers for a little bit but for now I'll keep doing my own stop gap orthotic making. It's too important to leave it in the hands of the professionals!
On another note, I have had to give back the lap top I have borrowed for the longest time which means I am mostly reading your blogs on my phone. I want you all to know that I am still reading even if commenting is hit & miss!
Quite an adventure you seem to be having with your foot. I send you my best wishes that you get comfortable in double quick time.
ReplyDeleteNot to worry about commenting. I understand.
Thanks Ramana.
DeleteI'm okay, it's all just part of having a condition which needs a multidisciplinary approach to care.
"too important to leave in the hands of professionals." Love that statement. Doctors often fuss at me for caring for myself with things they have not suggested. So far, I have not damaged myself! Plus, I have averted problems exacerbating. Good for you for caring for yourself.
ReplyDeleteSometimes people caring for themselves delay treatment to the point where it becomes very difficult so I understand the docs point of view but I also think they assume everyone to be the most roguue style of patient. Self treatment is quite neccessary in places where there is not socialised health care
DeleteYou are so right about the patient knowing quite a lot about their condition - and needing to be involved. I wish more medical teams realised that.
ReplyDeleteI am so glad that your methods worked - and worked well.
I hope your new orthotics are wonderful. And long lasting.
I'm glad it worked, too! I'll be happy not to bother with it though.
DeleteI seem to remember you had to make considerable efforts at advocating for "himself" when he was hospitalised
You are very right. And my eldest brother is currently in hospital (in South Australia) and rather a lot of advocating is needed there too (by his wife).
DeleteSome people are more passive about their care but for those who have the ability and desire to analyze issues and suggest solutions, I really wish the pros would consider us helpful rather than a nuisance or incompetent. Many of us are highly attuned to our bodies and have lived with our issues for a long time, which you obviously already know. I felt such disrespect (for my opinions and questions and decisions) from my next-to-last doctor that I stopped going except as a last resort. Fortunately he was only here two years (another story entirely) and our next doctor got me all caught up on care. So I hear you, and second (or third or fourth) you! Your daughter is lucky to have your first-hand experience to inform her future care giving.
ReplyDeleteIf you think it's applicable, perhaps you could also encourage her to encourage her future patients to tell her if anything feels off about the exercises or treatment she is doing with them. Sometimes patients -- especially compliant ones -- hesitate to say if a manipulation or treatment is hurting them. Last time I had to go to a physiotherapist, he did one form of therapy that left one of my knees sore for 4-5 weeks. I should have spoken up but didn't, because I was being a "trooper" . . . I thought. If he had just said, with each new stretch or manipulation, "let me know if it's uncomfortable," it would have made me comfortable speaking up. Maybe your daughter is already being taught this, though.
Hope your new orthotics work without too much adjusting and fiddling!
Disrespectful doctors not only get the patient off side but they have to be less effective in the long run. I'm sorry you had to put up with that, the problem is we don't know what we're getting when we get a new doc.
DeleteI'll ask Catlin if she looks for feedback, I know she already has massage patients who make their appointments on her work days because the other people in the practice leave them too sore.
The new orthotics should be amazing because a specialist is making them. On the downside I have to get orthopaedic shoes. Good bye any vestige of sexy :)
Ha ha! I left sexy behind loooooooong ago and I'm not yet even into orthopaedic shoes . . .
DeleteOops, wrote a book again, sorry. It never looks so long when it's in the comment box and I can't see it all at once!
ReplyDeleteI love long comments!
DeleteGood to know :)
DeleteDid you write this post on your phone? If you did Kylie, I'm impressed.
ReplyDeleteAlpbie
I hope to one day be good enought ot write a novel on my phone! I'm not there yet though and I borrowed the lap top back for a bit
DeleteI've been without the internet for a few days and then my computer died, so I know all about reading stuff from a phone, no fun at all. I'm glad you sorted your foot out, well for now anyway. Sometimes we know our own bodies better than the professionals do.
ReplyDeleteI feel like I've lost an arm when there is no internet! I'm glad you have it back now
DeleteIt’s really great information for becoming a better Blogger. Keep sharing, Thanks. For more details to visit Biker Knee Guards Online.
ReplyDeleteI think that the advice you have given your daughter is very wise. Many health professionals seem to overlook the fact that the patient will probably have vital and insightful contributions to make. Only yesterday, when I visited our local hospital to have the cancer on my back checked out, I told the doctor that after the first attempt at cryotherapy my back had seeped blood for several days. He said he would remember that in future and if any other patients asked if their cancers might bleed he would say - "That is possible but quite rare" instead of "No!"
ReplyDeleteYes, they give such definitive answers sometimes when there really are none of those. I was a bit concerned that your skin cancer bled so much, thankfully that's all over with
DeleteNo. It's not over. I had to have a second blast of liquid nitrogen.
DeleteRats! I hope this one works
DeleteI haven't really experienced that problem of indifference to the patient's knowledge. My doctors have basically listened to me carefully. My present doctor has noted that my own blood pressure readings, taken every couple of days or so, are well within safe limits and she's happy with that.
ReplyDeleteI hope the new orthotics will do the trick.
It's a common problem for those with chronic or complicated issues and for people who are unable to advocate for themselves. I don't know how many times a highly attuned carer has saved a life by pushing for further investigations
DeleteI've cured myself of a number of things over the years - sometimes doctors just don't seem to listen or think they know best when really I know my body best! Kudos to you for doing something that seems so basic but which really worked!!
ReplyDeleteThank you! It was basic and obvious and saved me a good deal of drama!
DeleteHi, kylie. I wanted to let you know that I happened upon your Thinking Spiritually blog in the sidebar of Snow's blog a couple of days ago and left a comment on the thread you and he were having back in early July. Have a look-see at it and t me know what you think.
ReplyDeleteThank you, Robert! I'm not sure why I didn't receive email notification of your comment. I'll reply there when I have a computer to use!
DeleteI have to say that my experience with the medical profession has generally been very favourable from the 'taking notice' point of view. Last week I had to go to A & E and the surgical doctor after diagnosing the problem and talking about what to do asked for my view on what should be done. We discussed it and she said "Right, you seem to understand your body and capabilities in this and I'll go with your suggestion." I'd like you to stay in for an hour just to make sure all is okay after I've done the procedure. All was okay. Next day I dropped her a 'thank you' note. In my experience her approach is not isolated.
ReplyDelete