[Carly]

Hello


It is nice to be here.

This site is very easy to navigate and I still did it backwards! But, now
I entered a profile and would like to learn as much as I can about Lupus.

My diagnosis is now definite SLE and secondary Sjogren's syndrome with
Grave's disease and hypersensitivity to sun.

I have been struggling with accepting that I can not do as much physically as BL (Before Lupus). I am happy, retrained and love my new job. It seems like I can handle working or I can handle the housework or I can handle errands. But, I cannot do any two of these.

Any advice is appreciated!

Carly

each day is a gift waiting to be opened

 

[debatat]

Hi Carly and welcome to the site. It is a very friendly site with lots of helpful info. It can be hard to adjust to life with a chronic illness, it is good that you are so positive. The most important is to learn to pace yourself. Spread things out, whereas once you would do everything all in one go, now you have to do a little and often. Could you have help with housework or errands? I do as much as I can online, as it helps. I am sure others will come along with helpful tips.

Deb

 

[Carly]

B12?

Thanks for the encouragement!

My Mom always says that I try to do 10 things, get 8 done and
then am hard on myself because I did not get to the other 2!
And that was Before I started having longer and harder flares.

My fiancee has offered to get help with the housekeeping and I do need to accept the help offered. It must be a pride or denial thing. I never really liked house cleaning anyway!

Just wondering if you (or any one else) takes B12 injections regularly?
My levels stay low and now I take an injection once a week. It does
seem to help with the energy issues. If someone else does my questions is
can the injection cause skin rashes?

I went to the dermy dr. on Thursday and he said I have Grave's (?)(sp)
disease. It sounds worse than it is, as it is related to the Lupus he said.

Once I use the cream to tame it down, he said there are new sunscreens (I am allergic to regular sunscreen) that do not have that old harsh white hard to take off kind of cream.

Anyway, thanks again and hope you enjoy the weekend!

 

[KarolH]

Hi Carly from a Jersey girl.

I take monthly B12 injections as I had my stomach removed and have no intrinsic factor for absorption.

If you feel you need it chat with your doctor about it.

Again, glad you found the board.:wink2::wink2:

 

[Carly]

Hi Jersey!

It is nice to meet you. I hope you do not mind me asking, is your stomach problems related to Lupus or the meds for it? Or perhaps another auto immune diseases?

My grandmother lives in England and had her stomach removed due to cancer (first she had a double masectectomy (sp?)) They basically attached the intestines to the remains. She has to eat almost continually and she too received the injection monthly.

You have to be one tough cookie, thank you for the advice. I am starting a journal, so hopefully I will remeber to take the journal with the questions and observations. with about a 3 month wait for the rheumy you would think I would have plenty of time to prepare!

Thanks again and I look forward to sharing tips and new info.

Carly

 

[KarolH]

Most people loose their stomach to cancer but mine was not cancer, thank god. I had ulcers that they could not heal and no matter what they tried they just kept coming with a vengeance. The doctor now feels it is due to vasculitis, probably microscopic yet they are guessing. They do agree that is is auto immune in nature yet not certain of the exact cause.

The doctor told me once the stomach was gone no more ulcers, WRONG.
I still battle the beast inside me as my nutrition numbers are now plummeting and a whole new set of health problems are stemming from this.

The ulcers are now attacking the duodenal area of the intestines where the esophagus was attached to the intestine. I remind myself it could be worse, and it could however when I get a flare I get soooooo sick death seems better then the illness.

Anyway, I am glad you found us Carly and you will love it here. Sorry for what brings you here but I am certain you will learn a lot from a great group of people. Join us in the chat room sometime.:wink2:

 

[lazylegs]

Hi Carly,

Healthy people get exhausted when they work full time, run errands, do chores and take care of children so we shouldn't expect to be any different. The only thing is if we do it all we tend to flare. You mom was right, you need scale back your expectations if you want to feel well.

I find it helps to make a list of things to be done, but without the intention of completing it all. One thing may get done or five things may get done depending on how my body feels. Learning to stop before the point of no return can be tricky. I tend to think I can do one more thing, then maybe one more. It took years but I finally came to the realization it is best to leave some energy in the tank.


Take care,
Lazylegs