[dixy]

Hello

New here Lupus 3 years now,sick of being sick.:worried: Think Im having a flare up treatment end of May cant wait that long. So scared of going back to how ill I was I turned into a frail old lady could barely move the pain was terrible :sad:Couldnt bear to look at myself,( looked 110 years old)

Waiting for Drs to get back to me. Not good being ill weekends or holidays.
Aches and pains back, sweats,rash back all over my arms and face feels like its on fire. Tired could stay in bed all day. Feel depressed be nice to hybernate for a few months and wake up better (well I can dream)

Sorry for the rant hope I havent scared anyone off
Dixy

 

[LolaLola]

Dear Dixy,
Unfortunately I can identify with every word you say.
You are very welcome here and others will be along to greet you soon. We come from all different time zones.

You say you want to stay in bed all day- if it is possible then I think you should. I know this is not always practical but try not to ignore what your body is saying. It is not helpful to push yourself while flaring. oops, end of lecture!

xLola

 

[elisabethm]

:welcomeixy no you have not scared anyone of you could not have come to a better site.Just at the moment i am in a flare myself and it is horrid cant wait till the doctor opens on tuesday.So if you need to rant then do Hope you feel Better Soon Elisabeth

 

[lazylegs]

Hi Dixy,

Welcome to the site.

I hope you hear from the doctor bright and early. After a holiday weekend the doctor's office will be swamped so you may need to call in again so you can get the help you need. Hibernate all you want in the meantime.

Take care,
Lazylegs

 

[KarolH]

Seems to be the luck that one would get sick on a holiday weekend.

I do hope you hear from your doctor early tomorrow.

Welcome to the board. You will find The Lupus site supportive, full of wonderful information and awesome people!!!

Join us in the chat room sometime. I hope to get to know you better and good luck tomorrow. Let us know how you make out. In the meantime, rest as much as you can.:wink2::wink2::wink2:

 

[keebler]

Hi Dixy,
Welcome to the lupus site.

You have come to the right place to learn about lupus and very caring members.

Sorry to hear that you are in a flare.

Everyone has given you great advice. Let us know how you are doing.

:flowery:
Lyn

 

[Pink Pearl]

Hi Dixy and welcome to the board. You haven't chased me off......not going to happen.:hehe:

I hope you are able to get in to your doctor asap. Being ill on a holiday weekend is not a good thing. If you feel better staying in bed, then listen to your body. :worried:

The others have given you basically the same advice. I am sorry you are having so much trouble. In a flare the best things to do are to take care of yourself, get rest, keep your diet healthy, stay out of the sun and follow your prescribed medications.

Hopefully this will just be a short blip on your lupus radar screen.
Sally

 

[dixy]

Thanks everyone

Woke this morning and the rash is creeping up my armsAt least I know what it is and its not all over my body yet:worried:Theres no point contacting my GP as he doesnt know how to deal with me, he is very supportive though. [Me and my big mouth, changed Drs 3years ago and can remember telling Dr Ive never been ill,not even colds and stuff

/HTML]

Just a underactive thyroid wonder how many people with Lupus have this before. Also how many people with Lupus go on to get PH

Lovely sunny day really would like to get out in the garden. Will have to work in the shade, or be a moonlight gardener:lol::lol::lol: feel like a vampire when the sun shines. Will have to sort some long sleeves out and big hatand cloak:lol::lol::lol:
Everything seems like such a big effort and my memory is blank at times no concentration.

So annoyed with thinking what did I do or how did I get this and there are no answers:sad:
Will get on to the rheumy at the hospital hopefully she has had time to think about what to do with me

 

[Pink Pearl]

Hi Dixy,
I live in Washington state and have become a LOVER of our overcast days. I find I can easily be out there and get all done that I want/need to.

My father and neighbors don't catch on why I love the cooler days. They are out working on days I am limited to shade.

Start a shade garden. I did that several years ago and have gotten great enjoyment from it. I have hit garden sales and added to a collection of unusual ferns, hostas, and astilbes. This year I have relocated the roses since they were now in too much shade, and have a WHOLE new area to fill! The plotting is fun to add in new unusual plants.
Sally

 

[onetay]

Dixy,
Hi and welcome to the site. You can always try going to a emergancy room to see if anything can be done for you while waiting to see the doctor. It sounds like you have been bad lately and for that I am so sorry, if there is anything I can do to help you please do get in touch with me. You should find things that you enjoy doing that are easy to do and can be left for a period of time if need be. I am not sure that any of this has helped you at the moment but I do find that having things to do each day even for a little while do help. You might also consider getting a small pet that can curl up with you and keep you company when you are not feeling well that can make all the difference in the world sometimes in feeling better sooner.

 

[dixy]

result

Hello

Tue post,
Letter from 4 hosp for Wed 1.15 great.8) Hubby took photos of SLE rash just incase it dissapeared:lol: My ct scan lungs looked better not sure what bit but hey ho great. :rotfl: Had my retoxomab brought forward by a month so 2 weeks. Then was offered methopred jab dont know what came over me started laughing all hysterical like. NO way wasnt expecting that would have slathered my bum in emla cream. I always do my arm for bloods as I always have 15ish files of blood.(needle phoba)
Compromised prednisolone 30mg for a week then 25--20-15-10- 7half.

Then off to the dermatologists sort my itching out meeting with all the dermatologists I thought maybe 4 or 5. It was a really weird experience bit like a train station there were LOADS of them :worried: Hubby took photos and a cd so they can zoom in:lol:Should be good :hehe:All get together and come up with some ideas to try. will get back to me.:wink2:

Well tired couldnt wait to get home to have a sleep

 

[dixy]

update

hi

Well what a day worn out shock 2 get up 6.30am( havent seen that time of day for a long while):lol: For 8am Retuxamab IV6 hours and methopred. So 1 hour the steroid . Hold up ar pharmacy 4 retux finaly started at 10am. Veins tried there disapering trick.Even though I saved the water pill till after tried to make sure I was warm and hydrated. Emla sort of worked, Brilliant nurse finally found it lol.:lol:Well in time 4 tea and toast.Finished 5pm. Great timing the rush hour, arrived home 6pm. So tiring sitting on your bum all day.