Being scared

[elise]

today i had my dressing changed for my wiggly, dad did it and had to curl this bit of pipe up again if anyone tugged it, the pipe circle will come loose, not the wiggly itself. he stuck it down and i felt it a little uncomferatable this time. I have also changed my wiggly bag.

There was this plaster stuck to my neck and it is really sticky, i have a big scar underneath, i have always been scared of ripping that off, so i keep soaking it, most of it come off and i was crying my eyes out , dad offered to do it with the tweezers and i said "no". but eventually i got fed up of going slow and asked dad to come and rip it off, he did and i was gripping my legs everytime it hurt.

I looked in the mirror and looked at my neck, there was this pipe sticking out underneath my skin, i was so scared and upset because of the state they've made me, i shown dad and he said " if they did it any deeper then your lung could of collapsed again".  but im still scared, i have been all my life.

I have the hospital tommorrow. we might go in the car or take the taxi , dad and me want to take the taxi but mum wants the car. 
we got a phone call, we have to go to queens medical centre, the nurse wasnt coming because they may as well do it at the hospital, so we've been waiting all day for nothing. 

we dont know why we are going to Queens medical.



Elise

[Scottietottie]

Hi Elise 

You have been through such a lot - no wonder you're scared! Most people with Sjogren's haven't had to put up with everything you've had to put up and you are still very young.

All I can say about pipes and tubes and scars and wigglies is - they have kept you wonderfully alive! Hopefully - at some point - they will be able to remove them. Because you are young your scars will heal and in time will pretty well disappear.

It's horrible having to go to a medical appointment when you don't even know what it's for. I hope, whatever it is, it's helpful and that the docs are nice.

Do tell us about it!!

Take care - Scottie 

[Victoria05202000]

When you are in the taxi....all of us are there with you. It is OK to be scared.

Holding your hand always.

Take Care,
Vicky

[lynnmarie219]

(((((((Elise))))))

Sending you lots of hugs and hoping that you are feeling better! How did your appointment go?

[Patze]

Hi Elise,

I'm sorry that you're having to go through all of this, and you are braver than I would be!

Good luck at the hospital and let us know if it went okay for you.

Take care and hang in there -

Patze

[elise]

Scottie- yes thanks the doctors are very kind to me.....i get to know them a lot and i am getting to know E38 ward staff as well in the queens medical centre, there is this one nurse Mark that disscusses everything with me before doing it and i thank him for that, he also cheers me up, he has a great sense of humor, he once moved my sis of the chair and told her shes naughty cause she was in his way whilst he was trying to do my observations lol!

I have had one scar that will never dissappear, or maybe more, i have a load on my left side when i had my lung biopsy, one from the chest drain with my lung biopsy and one with the chest drain awake.

i also have one forever underneath my armpit. from where i had my portacath, it will never go, they depresss me sometimes, i wish they never happened.

Thanks vicky.

the appointment went ok, we only saw Dr venning, we didnt see the specialist nurse liz. i am having another day of chemo on thursday. i will still be able to keep in touch though because i will bring my laptop in. i have to have methyl pred and chyclophoxfamide - dunno how to spell it lmao. 7 hours worth  

[elise]

thanks patze

elisee x

[lesmom]

I have scares to from many different surgeries and accidents off of horses. I think of them as badges of courage. They show that I have been through something, but I'm still here and I'm still kicking. Keep your head up, stay brave and know that it is ok to be scared.

Big hug for you dear,
Leslie

[Poochie]

Hi Little One,
Can I be scared with you?  I don't care for hospitals or tests or treatments, but I know I have to have them.

I too have lots of scars and like Leslie said, they are badges of courage.  Wear yours with pride for you have been the bravest young lady I have ever met.

Please know that I will be there with you in my thoughts and prayers.  Also PoohBear and Paddy, too. 

Hugs, Love and Smoochies,
Pooh   OOOOXXXX

[elise]

thanks pooh:) i will think that they are bandages for courage now.  well last night i was running around the garden playing bat and ball and football and it was great to be active like i used to be, it was so funny because dad threw a tennis ball over the roof and it landed on the front so we ran to the front to see it near the car.. it was sooooo funny! and throwing pebbles at mum whilst she was watering the plants!!  tonight my mum is going out 8:15pm till 12:00am.  Me and dad are gonna watch the whole collection of austin powers, we have crisps and sweets while we eat them! theres this big poufe, a bit like a bed and dad is gonna bring it down whilst mum is out, mum says that we cant have it down but dads gonna do it whilst mom is gone XD. were sneaky like that as you can work out lol. 
  from elise x

[Epson]

Elise,

I can sympathise with you, I had a wiggly sticking out of my back for only two weeks and had it taken out on Monday.  Coming out was a lot easier then going in to my kidney.  It's always kind of scary when your going to have something done to you that you have never experienced before, but somehow we all get through it.

[elise]

thankyou Epson x