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View Full Version : off to consultant tomorrow!!



tiggerlishus - Heidi
03-15-2009, 10:44 AM
Well tomorrow i got to leave college early as off to consultants!! written a list as long as my arm but wonder how much i forgotten and how much i will get out
all ways seem consultants in a hurry!!
well here hoping they come back with something constructive!! starting to feel like i'm a hyprocodriact!! ( god know if i spelt that right!!)
going to find out rest of results for mri!! see what the little black dots ment!
if i need to see a neurolgists!
what blood test say!
and what she thinks about the steriods !!
just seems never ending when will it stop!!!!!!!!!!
as you might tell feeling in a very negative oh woo is me mood!! which i hate as i'm normally such a postive person!!

Iam really just soo fed up of :
feeling fed up!
of forgetting things even forgot to pick up my nephew from school the other day!!
of my house forever lookngi like a mess
of stressing over money
of just generally feeling soo bloody lonely!!!

ok my rant is over!!

if you got this far i jsut thank you for listening!!! :hissyfit:

Angel Oliver
03-15-2009, 11:41 AM
Oh Heidi,

Goodluck for tomorrow and your appointment. I am sending you gentle hugs.

love
Angel.xxx

sick n tired
03-15-2009, 01:31 PM
Heidi,

I am sorry you are having to go through this. It is hard and you are having to do it at a young age and jugle with college, too.
I will pray that the consultant actually listens and is attentive and affirming.

tiggerlishus - Heidi
03-15-2009, 01:41 PM
thank you both for replying i just feel so alone at mo mum has said she'll go with me out just think it will be more stessful as she has fybro and is clinicaly depressed, so all i'll be doing is worring how she is feeling and going to respond so i've perswaded her to meet me after for lunch so if theres anything bad i can sort myself out before i see her
soo i can't off load on her!! just feel soooooooooo tired as well at mo which ain't helping everything seem to be falling throu my fingers!

sick n tired
03-15-2009, 01:57 PM
Oh Heidi,
I am sorry you feel so alone. I wish I were there I would go with you. It is great that your mom wanted to go with you in spite of all her problems. Mom's are pretty tough, though...she might be able to help you or at least be a sounding board for you. Especially since she has an illness and understands the run around you can get with medical officials...I have daughters who try to keep how they are feeling from me because I am ill even when I am the one that they really wish to run to.
I do try to encourage them to know I am not as fragile as they might think but it is very nice that they think of my feelings...I will say the same thing of you too, Heidi. How very sweet of you to consider your mom's feelings.You sound like a very loving and attentive daughter.

tiggerlishus - Heidi
03-15-2009, 02:05 PM
thanks but my mum has tried to commited sucuide several times and been in and out of physatric hospitals since i was a child, soo i learnt the hard way years ago how to tell mum things and what not to tell her, i had to look after her most of my teenage years whilst at school!! don't get me wrong i love my mu to bits and she has tried her hardest just not one of those mums you can cry on thier shoulder as you know they will cry to!! i'm sure i'll be fine been going to them on my for 6 years now!! just the whole thought of neurolgist and stuff bit scary!!! but thank you very much! xxxxx

rob
03-15-2009, 02:33 PM
Heidi,

Whatever you do, try your best to not let them hurry you. It's OK to be an obstinate pain in the butt. So many of these specialists and consultants act like they are so busy, and in such a hurry, when all they really want to do is go for a coffee and a smoke. Good luck tomorrow, and remember that they work for you. Let us know what you find out.

Rob

tiggerlishus - Heidi
03-15-2009, 02:37 PM
thanks rob will do!!! thanks for replying! x

Angel Oliver
03-15-2009, 04:26 PM
I'll be with you in spirit.When you sit down...remember...we are all stood behind you:You_Rock_Emoticon:. Be strong and like Rob said....take your time no matter what.

love n hugs
Angel.xxxx

lucky7
03-15-2009, 05:33 PM
wow Rob, you couldnt have said it any better. Mine are always in a hurry too. I feel uptight cuz i need to hurry up and cram it all in with lilttle time to do so. I feel as if MOST of its not even being heard. Come to find out most of it wasnt by some drs! IM putting a call in to the AMA.

mountaindreamer
03-15-2009, 06:13 PM
i agree...sometimes you just have to slow them down. If i feel like they are rushing me, i let them know that i have a few things to discuss, and that i appreciate them taking the time. i get a disgruntled obligement some times, but i don't care, as long as my questions are answered.

this is another reason that writing down questions is advised. When the dr. sees your written questions, then they feel obliged to answer them. just take your time, use the lupie brain fog card if necessary, and try to come away feeling like you were treated with the respect that you deserve.

good luck....let us know how it goes.

i am soooo sorry about your lonliness....wish an ocean did not separate us.
:grouphug:

Faith
03-15-2009, 11:46 PM
Heidi,

You are not alone; we are all here to support you. We all have those days when it's just not going like we would like it to. My house is not as picked up as I want it to; but I am tired and need naps. Sometimes your health comes before having a perfectly picked up house. lol. With what you are going through, it's okay. That was hard for me to accept as my Mom's house looks like a model home.

I am forgetful as well. The neurologist may run some tests if he/she feels more are needed. Just follow it through and take one day at a time. Taking one day at a time seems to help as well with coping. As Scarlet O'Hara said in Gone with the Wind "there is always tomorrow." lol. I remind myself of that a lot.

Keep us updated and don't let that doc out of the room until ALL your questions are answered!!!! :cute:

Faith

iseedeadmonkeys
03-16-2009, 05:01 AM
im so sorry ive not been there fo you!!!


I love you xxx

tiggerlishus - Heidi
03-16-2009, 09:35 AM
Firstly thank you all for your messages!!!! Janey don't be silly!!! i'm soo glad you had good weekend you deserved it!!
And secondly i think all of your love worked thou i really couldn't get out bed this morning alarm went of 3 times!!! i have been in a great mood not even the consultant could knock it out of me!!
So down to the facts - they still not sure on results of the mri if its anything its to early soo they gone do another one in a few months see if theres any change and the neurolgist is put on hold till after that!!
in the mean time i have found out as well as systemic lupus, & antipholicid syndrome i have the same as my mum and my sister and have fybromyalgia and they have put me on duloxetine 60mg. Which by way just makes lots of sense when it comes to pain stuff!!
they have also kept me on 15mg steriods and given me supplement adcal-d3.
And in my next lot of blood tests they're testing for raynauds and sjorn which will be 3 weeks before next apointment which is end of june!!

oh and my ana was negative which i'm seeing as a good thing as it was postive!! and my blood preasure which was 180/91 which she told wasn't bad either!! well i think thats it from what i can remember!! :wacko:

once again thank you for all your love and care oh and ps did lunch with me mum i'm glad i waited till then cause she was tearful just from worrying so iwas able to put it in good postive ways as i was in such a good mood that i wouldn't have been able to have crying before i went in Isdm will tell ya i was bundle of nerves talking hundrend mile an hour which reminds me i made comment to the doc about sorry about my rambling and she said at least you not slurring soo the steriods arer doing something made me chuckle as i left!! but god i could sleep for a week!!! lol :sleepy:

sick n tired
03-16-2009, 10:00 AM
Good to hear you in a more upbeat mood!!! Perhaps the meds for fibromyalgia will really help with the pain and the steroids will finally start helping with the exhaustion.

rob
03-16-2009, 11:33 AM
Heidi,

It sounds to me like you are making progress towards a solid diagnosis, as well as taking control of your situation. Things are not quite as scary when you learn to step up and be an advocate for yourself. The feeling of not being in control, and not having your various Dr's and other specialists listen to you, really tears a person up emotionally. It kills confidence. Coming here, and reading about others who stand up to their Dr's and begin to take charge of their treatment like you are, inspires others to do the same.

Rob

tiggerlishus - Heidi
03-16-2009, 11:55 AM
Hay rob thanks for that i don't if i would say i was strong just spoke at hundrend miles an hour and didn't let them get word in till i was finished more nerves than anything i get like that when nervous ramble at hundrend miles an hour!! lol
but if i inspire anyone as much as you guys have done to me that would be soooo wonderful!! thank you for your kind words!!
as far as solid diagnose its took what nearly 6 years from first reum appointment and 29 years from problems starting was only discusing with my mum earlier at 6 months old i had to have spinal tab in my back as kept getting ears/throat infections soo that how far back it goes!! i was saying to my mum i think they could add ana test to other test they do at birth could help in getting diagnosed early enough??? just an idea ???