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Posted By : Gemsi - 3/10/2011 3:13 PM
Hiya,
 
Hows it going? Just noticed you also went to DRI, OMG it is a small world!! From about age 3-age 14 I went to DRI. Then I moved over too Sheffield Childrens as I found that I wasn't really getting great care in Donny and their microbiology labs weren't great for spotting infections.
 
At 18 Sandra pushed for me to go upto to Adults. It sucked at the time, infact it still sucks now mostly as I can't get on with the docs even after all these years. I'm 25 now and I find getting info from them is like getting blood from a stone.
 
Just recently had a 2 week stay, was released on Monday to go straight into college-yay! The staff on the ward get better every time they're so cheerful, it's my 3rd stop in since it opened. It's not too much of a chore to stay in, it still gets boring though doesn't it?
 
I know what you mean about losing friends to CF. Sami, Karla, Harriet and Sarah passing were all very sad for me, and I've never really got over it. I still talk to my friends with CF, but hardley see them now, don't even see my brother very much these days as we avoid each other when we have a cough.
 
Didn't think anyone else from our area used these forums. I hunted them down as an alternative place to go when I was really struggling with a new diagnosis of a muscle condition, which they still don't know much about and FE wasn't so impressed at my use of the CF trust forums to vent on.
 
Anyway-I'm a bit easy to excite, and this is another of those times.
Hope you are well
Gem
Hey, I'm Gem with CF, age 25 and diagnosed at 2 years old. I'm from the UK and say weird things sometimes. I'm no expert but I've lived with a lot of CF.
Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum. Waiting for final diagnosis on Muscular Dystrophy type thing.

Post Edited (Gemsi) : 3/10/2011 2:19:11 PM (GMT-7)


Posted By : midge-lea - 3/12/2011 6:47 PM
Hey,
 
im not too bad now thanx, you went home monday i came in tuesday :) this is maybe my 4th time of being in, yeah it can still get boring i love the comfort of my own home lol cant beat your own bed.
i'm 21 in april, i started at rotherham as a baby but they were crap honestly, then i went to sheff childrens under dr arrowsmith my mom hated him and he kept belittling her so she took me out brfoe she decided to beat his ass lol,
then when i was transferred to DRI under matthew kurian i used to be on ward 31 i enjoyed it for a long time then grew up and realised that some of the staff werent as nice as they made out, so i transferred to NGH at 16 but as i do my own i.v's i normally come in for 3days then go home and finish them myself. this time i felt really rubbish after getting back from my dads with a chesty cold that i couldnt shake, i ended up being violently sick on thursday out of nowhere  but aparently its cos there was too much sputum in my stomach cos my chest had been really bad. im also awaiting an endoscopy to see if i need laprascopic fundoplication operation due to my over productivity of acid. i finished college last year and qualified as a beauty therapist, but im not a prissy one i like metal and i have piercings, i dont wear makeup really unless its a special occasion, i hate the stereo typical dumb blonde beauty therapist that every other BT has set the bar for lol. but i am a nice person lol.
 
im waiting for this op to be out of the way before i go get a job but i do treatments for a few people everyso often.
i havent been on the CF trust website, i didnt think bout it to be honest i stumbled across this one and i too am shocked that someone else is so close but on here lol, so do you get on with FE?
 
thats rubbish that you dont get to see your brother much, guessing he has CF aswel then, i'v got a lil sister but shes all fine thankfully.
its nice to talk to someone else, would you like my E-mail addy so we can keep intouch as im not always on here.
 
its ok that your easily excitable lol i get like that sometimes :)
take care
midge
xx

Posted By : midge-lea - 3/12/2011 6:49 PM
sorry forgot to ask whats the rare muscle condition you were diagnosed with if you dont mind me asking?

midge
xxx

Posted By : Gemsi - 3/13/2011 4:07 AM
Hehe glad to here you aren't a prissy beauty therapist. You're right there are way too many of them about and they do give thye job a bad name. I like my piercings too, and tattoos. I finished college in December. I've qualified as an IT technician and also done the first part of my teaching quals. Now I'm just volunteering when I can with my old teachers, I love it but it does bring about a realism sort of of how I would cope in a teaching role, which wouldn't be very well.

I've heard of the Fundo op, I hope it goes well for you if you have it. I suffer with acid but it's controlled by omeprazole so it isn't too bad. I've had that level of sickness with sputum overflow too, it's awful isn't it because it does cause really violent sickness. I hope things have got better for you now, when I was in Sarah the student physio kept coming round and giving me some old school bashing physio. It was good, but I think I prefer my Acapella. :P

FE is a hit and miss with me, I don't think I can take him seriously anymore, so he's good if I'm feeling well, but I can't do serious discussions very well with him. MW is a bit better for the serious stuff and has a much better memory which makes things a lot easier, but it's not good if he's in a rush to see you as then he tries to rush through everything and things get missed out. They both have their good points and bad points. It would be good if they actually spoke to each other too. They're really bad at it, and especially FE sometimes with the whole "well that's how he did it, but I'm doing it my way as it's my turn".

The muscle thing, they still don't know much about. I have some enzymes that rise really high and cause muscle breakdown. Though those levels are now under control and they're low I still struggle a lot with muscle weakness and my weakness fluctuates on a day to day basis with how much balance I have and how easily I tire out. I was seeing a neurologist who said he'd only ever seen this in muscular dystrophy and my symptoms could only really indicate muscular dystrophy, they just needed to find out the type. They took a muscle sample and did lots of genetic tests and they found nothing. It just seems to be something weird that happens to me for no reason at all. The CF team thought it might be related to low vitamin D levels, but they've stabilised now and I still find myself falling over and getting tired really quickly. FE just calls me awkward, I guess he's right.

Yeah my brother has CF too. He does so well, only need IV's once a year or longer, he works full time as a chef and does so well. I have a sister and 2 half-brothers too who don't have CF, I am so happy that they don't.

My email addy should be in my profile. Would be good to chat :)
Gem
Hey, I'm Gem with CF, age 25 and diagnosed at 2 years old. I'm from the UK and say weird things sometimes. I'm no expert but I've lived with a lot of CF.
Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum. Waiting for final diagnosis on Muscular Dystrophy type thing.

Posted By : midge-lea - 3/13/2011 10:42 AM
Hi,
thank you for getting what i meant bout the beauty therapy thing, the nurses found out and a couple were like so wheres your slap and peroxide blonde hair, i mean you can quite clearly see im not into it like that, i have blonde hair but thats cos its my natural colour, and its only gone back to my normal colour in the last couple of years, there arnt enough colours on the rainbow to express how many colours its had in it lol, im so glad your not a norm either :) this makes me happi.
 
honestly i prefer FE to MW, i think MW is too serious but FE is serious enough when i need him to be so i cant complain, but yeah they just dont seem to communicate with each other very well, but as a whole the unit is lovely and very helpful i feel.
i'm on esomeprazole and ranitadine for my acid but nothing stops it, it comes up at least every 10mins throughout the day which can be really frustrating, cos no matter what i eat or drink it doesnt sooth it or make it any less, but i love acidic things, like vinegar i love loads on my chips and i love fresh orange juice but they kill me to have now so i dont have them as much even orange squash hurts in the end so the only thing i can drink and not feel the sting with the reflux is milk and water but i hate water and cant afford to keep myself in milk as my other half drinks it all aswel, most of the time before i get to the fridge lol.
so hopefully i'l get my answers from the camera endoscopy which iv found out is on the 21st of this month then i'l find out from there weather their going to do the fundoplication, iv suffered with my acid like this for over a year now i'm just fed up.
 
that is strange about your muscles, i get pain in my legs from not absorbing enough vitD but what your describing sounds compleatly different, i hope they work out what it is and find something to help you, as it seems to affect you differently day to day, which is going to get in the way of daily life i would imagine.
 
thats fantastic about your brother though how well he is, im really happy bout that, you dont find alot of us who dont have regular i.v's cos we'r knackered up. and he's a chef wow he's really fulfilling his life.
:D
 
i'v added you to my msn addi but i only really use it for e-mails lol dont normally spend alot of time on the computer unless im in here or bored lol.
 
yeah im all good now the sickness only lasted 3hours but it was just continuesly all i wanted to do was lay down but everytime i did i felt even sicker and threw up again, i was so exhausted i couldnt even talk to the Dr. to answer his questions about how i was doing, the nursing staff were brilliant though, they were moppin the sweat from my forhead cos i just kept pouring then going cold, my stomach was so painful it felt like it was gonna come up too lol not a nice feelin so sympathise greatly with anyone who suffers with that on a regular basis. they gave me anti sickness stuff but im allergic to alot of it as it gives me muscle spazms i had one and it made my neck twist upwards which after id just had a new port that wasnt good, but it made me more flexible lol, but the second one worked this time no idea what it was called though i was just like give it me now !! lol
 
take care
xxx
 

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