In true teenage style I was 3 weeks ago crying at my doctors because I was feeling dreadful and needing Illoprost (rejected as my hands are not too bad, its just the fatigue bothering me and my hands being sore all the time). Now I have to go and tell them I want them to organise injections for Sri Lanka.
I'm dreading explaining this to my consultant who is a good doctor but seems to have no emotions, the point is I might still feel rough but abroad is going to be warmer and I might never have the chance again!
Persuded my mum to come visit me to chum me to the Clinic appointment. I always normally go by myself,,, but I guess I am not the only one who finds the experience terrifying? I am dreading going since the last time I saw him I had a fantastic burst of hysterial crying (I was more just fustrated and subsequently very embarassed!) Medical professionals can be terrifying when you are on your own!
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Hanosity
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Yes, and it is good to take someone with you not only for moral support but to remember things afterwards! Or to remind you of things you want to ask, so many times I walked out of appts either having no idea what was talked about as I am a bit shell shocked or kicking myself because I forgot to ask something really important and now have to wait three months to ask. I have started making lists as I think of things and taking those with me, as well as writing key points down. The doctors arent always thrilled about this but I figure, hey its my health we are discussing.
I hope you have a really great trip to Sri Lanka and all goes well!
Enjoy the trip. Try not to stress too much either - I know I'm stressed when my hands start going "patchy". I know it's easier said than done but just tackle each day as it comes and don't let it overwhelm you. Have a great time
I so know the feeling. I too have gone in really hopeing to have iloprost, its horrible doing it but its the one thing that can make things better and allow me to lead a normal life (which does still involve wearing gloves in summer etc but thats ok because that is just a part of me). last april i went in with chillblanes etc and the hospital deemed them to be not yet bad enough to require iloprost - I was gutted because i know if i continie to live my life the way i want they would get that bad and of course i dont want that so i had to stop doing lots of the things i love because my hands hurt and i know they would just get worse (people are more understanding when you use the sorry i cant do ........ because its too cold in the winter but when you say it in the surposid summer people give you odd looks). what also shows how much that hospital did not know, their main arguement was dont worry it will soon be summer and they will heal their self in the warmer weather. NO they wont (and didnt), summer is just as bad people feel the ridiculas need to use air conditioning, there is the wind, shade, fridge, freezer, getting out of the shower, driving and many more things that still cause attacks. concequently i had a rubbish summer (not to mention august was freezing), my december was better (id had iloprst by that point).
I have to also say im under two hospitals and the other one is so good at making you feel at ease, they understand whats going on, really listen and come up with real solutions to problems etc.
Good to know someone else feels the same Kaz! I really depend on the illoprost and ironically its been hard going since my hands have been a bit better as they have cut it down a lot. The Illoprost makes me almost symptom free for a while so it is fustrasting when it just 'isn't quite bad enough' because you know enivitabely it will get worse again! Also I don't know if you find this but I get such a general energy boost and feel so much physically better (not just my hands and feet with the illoprost).
My Trip to the hospital actually went really well, I managed to get all my questions answered and give my Consultant a bit of a run for his money which gives me a bit more confidence in going back
Thats good to hear that the hospital trip went well.
I also get such an energy boost when i have had iloprost. I feel so so much better just back to normal again. It takes a day or two after to fully get over the 'rubbish' feeling you get when the drugs going in. But after that i am as right as rain. I have primary raynauds (just some weirdly severe case for primary) so once they have reduced the raynauds symptoms all the other feelings of tiredness etc dissapere,
Hope you have a good trip to sri lanka and its nice and warm for you.
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