It's back with vengeance

[Rebecca1993Foster]

Hey guys, I havnt posted in a little while..

Little update!!

I had my dermatology app moved to Friday just gone.. I was finally seen by a lovely man, but have me the news I was hoping not To get, after a much detailed body search and intends questions, he figured I have not just got scleroderma, but it's now become internal, systemic!! Fuck my life!! You know when your body tell you something really not right, and no doctor would listen to me, thank God I demanded an app.. any way he told me that I can no longer be seen by dermatology, so will send me a referal for a rheumy.. I got home from the hospital and i cried my eyes out!! Never have I felt so shit in all my life, I litrally felt so sorry for my self but also relieved that something is starting to go in my favour (sort of) hopefully after more blood we can determine more and start treatments .. sorry for the rant, just needed to lift it from my shoulders 😁 happy jump day everyone.. everyday is a new day, enjoy every day as it comes 🧚‍♀️

[Hidden]

I have the systemic type also. Totally crashed for about 3 years the outlook is so grim. Decided that it was teaching me to live now. Don't have to save for long old age. You didn' say your age. 62 now and finally spending on me. Doing all I can while I can. Shopping trips new hobbies... life is better now. No longer living for tomorrow or trying to fit in. Hope your Dr helps and you arrive at acceptance

[Rebecca1993Foster in reply to Hidden]

Oh my love, that sounds awful!! I am over the moon, your looming at things now from a different perspective!! Well done you!! I'm 25 this year, I've had localised scleroderma since 2004, so I was 12 when I got diagnosed xx

[GGhere]

Hello Rebecca

I hope you have got over your initial shock and are feeling more confident now. I have the dreaded systemic type too. It is a bit of a bum deal isn't it? I too struggled for several years turning up at my GP with various symptoms and he never quite joined up the dots and made me feel like a hypochondriac - I had tests at every department the hospital could come up with and finally, like you, I ended up at rheumatology. However, life does go on. Not quite as you would wish but I now take each day as it comes - good days, bad days. Sometimes I'm really fed up but there are happier days too. I'm probably older than you (78) so I don't feel quite as "deprived" (for want of a better word) as you must do with the limitations this crap disease lands us with. I'm sure you'll be able to pick yourself up and say "I can do this"... after all, we've no option. The thing that leaves me speechless these days is the fact that the scleroderma skin thing has me looking more tanned and smooth skinned and when I meet someone I haven't seen for ages their first words are "you do look well". I want to scream at them I haven't slept for ages... my skin screams all night, my joints hurt, blah blah blah and all the other rubbish things that happen to me. I've given up telling people how awful I feel... so it's nice to come here and have a moan. Sorry, I'm supposed to be cheering you up. SO I hope you are feeling more able to cope now and maybe it will help after more visits to your consultant. Mine told me, "we can't cure you but we can make it more manageable," and I believe that to be true. Take all the help you are offered and most importantly - have fun on your "good" days. I'll look out for the day when you come back here to tell you feeling better. x

[Hidden in reply to GGhere]

And we want to claw them when they ask if we are better.

[Rebecca1993Foster in reply to GGhere]

Hi my love, I'm so sorry I havnt replied sooner!! Thankyou so much for your message back.. makes me feel a little more human and not so much alone..

Still awaiting more app and more tests.. I've been feeling so crap these past few weeks, yesterday we went to lyme Regis in Dorset and it was such a beautiful day spent with family, but I'm now sguckbin work feeling like my body has just gone caput.. trying to stay positive anf happy (easier said than done) but we will get there I hope xx

[fairy56]

Hi Rebecca, whenever any of us get unsuspected news it does send us into a spiral of negativity, it is only natural. It is also okay to have a rant, it does ease the stress. So whilst you can, Smile and wave, smile and wave. xxx

[Rebecca1993Foster in reply to fairy56]

Thanx my love, and thankyou for everyone for all support.. I am so grateful as I have been feeling so alone with all that has been going on, you all are making me feel more human and not so alone, but mostly making me feel like I can kick it's ass and come out on top.. love to all xx

[X-Woman]

Good for you for standing up for yourself. Most of us, myself included, would just accept what the doctor says and leave things at that, basically living life in limbo.

So YAY 🙌 to you!!

[Rebecca1993Foster in reply to X-Woman]

Thankyou hun!! My body was telling me something was wrong.. I am quite head strong when I need to be and I have a bit of a bitey tone sometimes 😂😂