Top Tweets for #SarcChat
@buttahflyk A6 #SarcChat #SarcDocs #360itChat
When doctors are helpless with diagnostic and do not know what to do with the helpless and frustrated patient.
When patients have to call their selfhelping group to get more helpfull information.
@buttahflyk A8 there is nothing personal about asking for a second opinion. You Dr wont mind. Especially if you ca find a sarcs specialist to refer to. #SarcChat
@buttahflyk A6 The Drs I've seen in recent years seem to be set on damage control, As Im not getting any worse, they really dont seem bothered about making anything better. #SarcChat
NO #SarcChat today per the #Dazzle4Rare rare calendar of events. Thanks @buttahflyk for sharing this on the calendar. Hope you are OK! Sending loads of love! ๐๐
@buttahflyk A4. Not having to go where all the people are is a major plus... Every now and then I see someone trying to set up F2F support and it makes my toes curl Im afraid.. #SarcChat
@buttahflyk A9.Iโm lucky healthcare is cheaper in Germany. The German system of always having to see separate doctors annoys me. Going to experts is good but for all the little tests! Trips to cardiologist, ophthalmologist, neurologist, ENO, pulmonologist, rheumatologist #SarcChat
@buttahflyk @StroppyOldGet My mental health is very good. I still have had doctors trying to tell me I must be depressed. Then they think my disagreeing is a reluctance to seek help. Honestly Iโve been through a lot. At least for my mental health I know when to ask for help. #SarcChat
@buttahflyk @ICTGeekette Last time I saw the Dr, he asked If I thought I was depressed. I asked him if he had seen whats going on 'out there' He is on the pills, and so am I now. Soon we all will be.. #SarcChat
@buttahflyk @StroppyOldGet It was a quiet pub, which was lucky. Maybe its the Amitriptyline, but It didnt realy feel anything much. Wouldnt have taken a lot for me to bail out of it though #SarcChat
@buttahflyk a2 Still not bothering as a rule. Supermarket, and essentials only. Did have a pub lunch last week though. First one in months, not planning to repeat soon. Maybe in the spring #SarcChat
@buttahflyk A4
#SarcChat #sarcoidosis #SarcLife #SarcStrong
#advocacy #PatientAdvocacy #SarcAdvocacy
My little family understands, but parents, sister and a lot of others so not understand. My friends do, think I searched them because they do ๐.
Not easy to explain doctors and others.
@buttahflyk A7. I stayed on Prednisolon for longer than my Rheumatologist advised. Nothing else was helping and I could n't function. Dr was only interested in the Lofgrens & didn't bother to investigate my chronic issue.
#SarcChat
@buttahflyk A6 was fairly straightforward, for overall sarcs, but ever since its been 'Well, you have sarcs, so its that. With little attempt to treat apart from pres, and now anti -Ds.. #SarcChat
@buttahflyk A4. I've got really good friends and family that are very understanding. At first they didn't understand the level of pain and the sudden fatigue but they do now and I don't feel embarrassed if I have to bow out of something. #SarcChat #sarcoidosis #SarcLife #SarcStrong
@buttahflyk @grumpyIronYard Affraid my activity on this doesnt go much beyond cheering on Daisy Cooper who is doing good work on this in the face of a shambolic government #SarcChat
@buttahflyk A1 In the Uk we are trying to get Evushield for immunocompromised. Its not going great..
#SarcChat
@buttahflyk A1. I realise that I know far too little about health provision here and need to research more. #SarcChat
@buttahflyk Annabel here from Germany. Normally speak to mum at this time but we've already talked today, so I'm all ears, or rather all eyes.
#SarcChat #SarcStory
@buttahflyk A8. An anti-inflammatory diet (which I donโt always stick to). Taking more breaks and not staying still for too long. You have to keep moving or you will literally seize up. #SarcChat
@buttahflyk @janetkjay @US_Pain A5. I am fortunate to have a remitting type of sarcoidosis. My #mentalhealth is not too badly affected. Iโm still having good periods between the bad. I try to keep doing new things seeing new places and that helps. #SarcChat
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