When I got my first letter, (from my second rheumy) I corrected bits of it that were incorrect and sent it back and asked for a corrected copy and for the same to be sent to my GP.
I can see I still have some way to go to reach the required levels of assertiveness for managing this condition. I feel you might have made short work of my consultant who seems in a constant state of confusion.
I
Yes mine does Seenie - very like yours (despite yours being in Canada and mine being in Bath in the UK) and itâs really useful to sort of re-gather my thoughts before you go into the consultation room too, despite my own various lists. Invariably thereâs also some other research type questionnaire to complete if youâd like too. I complete everything as the more they know in the way they want it, the more clued up they are not just for me, but for others too.
What this forum taught me is that the global world of rheumatologists specialising in PsA is actually rather small.Those rheumatologists who are at the top of their game in this, invariably know each other, communicate with each other and collaborate with each other etc etc. They share research, collaborate on best practice and share for me that one important trait, sheer passion for their careers in it. And they win grants for their research in it, that bit is important.
Itâs what led me to asking my GP to refer me to Bath under the NHS and boy was I lucky to get there despite it being over 200 miles away from where I live. Doesnât stop me giving them a hard time when necessary though.
Most probably @jcol. That would send my stress levels soaring lol. And given that I would therefore ensure his reached similar heightsâŚ
Donât forget @Su26 doctors invariably think patients exaggerate. So I do make sure they can hear you!
Hmmmm I am probably a bit of a drama queen with no pain threshold at all so heâs probably worked that out lol. I do completely take your point though
Su, you hit the nail right on the head there!
And, mentioning these problems to anyone, even the doctor, seems pointless because they donât look that bad to others. I remind myself often of how slow I am compared to my parents when they were 65. Thatâs when I realize how much PsA has affected me. Itâs a disability we eventually just accept and learn to live with, unfortunately.
I often tell myself Iâm lucky this stupid disease didnât really attack me until I was 50. I seem to forget how psoriasis has affected me since my early 20s. I NEVER showed my legs, always wore 3/4 length sleevesâŚhated going to the beautician because I was so embarrassed about my scalpâyet, I feel lucky now that it wasnât the arthritis pain all those years!
The whole thing just plain sucks!
Yes, it does really suck I would agree. I donât have the skin condition and I never have. My brother suffered from terrible Psoriasis all his life, he really struggled with it before he died (very suddenly late last year) That is just a constant battle to stay on top of it and even then, itâs just so difficult. I also do have the tendency to look around and think, there really are people worse than me so stop moaning Susan. I am also very conscious that the Drs will regularly see people who are much worse than me and so will see my struggles to hold a blinking umbrella as very trivial. Although it is really important not to compare yourself to others and their disease because we are all very different & what has an impact on me may not have an impact on someone else and vice versa. Although that is easier said than done. In the end though It truly does come down to the effect it is having on your day to day life and how you are dealing with that. If your journey to work in the morning is twice as hard then its twice as hard and thatâs a fact and itâs a fact that you probably deal with every single day. That does not feel small to you, it feels huge and it soon becomes very tiresome