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Angel MJ · 04-08-2009, 01:29 PM

at first this message board was really informative now as i read on & on i find myself affraid ...
so many symptoms that relate ... and then the thread stops

just read about dizzyness, blurry vision, balance problems, tinutis, walking into objects/walls (the bruises) and am quite affraid ...
my rheumie sent me on to the ent who disgnosed a polyp in nasal passage ... i have developed an allergy to diary so now avoid dairy & the ent ... the meds

off the subject ... the blurry vision started after plasmoquine -tried nivaquine but bad reaction. so i avoid (as much as possible) taking any meds now ... but is there a link to neuropathy?
i had an eeg before diasgnosed with sle and it turned up normal ... how 'often' would you do an eeg?
i can find out how to perform them but not how regularly you would have one done?

Angel MJ · 04-13-2009, 12:58 PM

okay so the scariest thing is what i can think up ...
my great fear for the moment is not being able to conceive - i am a 32yr old female and having children is becoming a thing for me ...
i know that being off meds and running the course of viruses & bugs are not helpful to my working on conceiving but i have over the course of this long weekend come to many realizations
THANKS TO ALL THE WISE ONES OUT THERE ...
i will be calling my gp to see best course of treatment options ... no medical aid so private care (wit the rheumie & px) no really optional ... but i need to get my system back under control ... if i ever want a child

VeeJ · 04-13-2009, 06:59 PM

Angel MJ, hi. I hope you seek a dr. for treatment. Life is too short, as it is, to NOT do whatever it takes to make the most of it. And wanting a child is such an important goal!

I think books on lupus can be very helpful, especially when you're recently diagnosed. Reading can help you ask better questions, follow your doctor's explanations better, be more aware of what to watch for, etc.

Please let us know how you're doing. Sending my best wishes, Vee

Angel MJ · 04-14-2009, 12:09 PM

hi vee
thanks for the reply ... i was dx in 2003 ... i do have my list of doctors but no money and i stayed off the drugs (not smart) but i am embarking on the government health help route ... hoping not to get lost in the system ... i will definitely be buying myself a mask to wear to such events as the clinic visits ... they have only just recently built a TB isolation ward at one of the only 2 govt. hosp. in jhb ... scary! and HIV & TB are among SA biggest problems ... i get the creeps thinking about places like that but i must keep thinking that this is for a bigger cause ...
anyway i see you post all over the place and appreciate the kind & wise words

Angel MJ · 04-16-2009, 04:11 AM

hi ... so i have my first appointment in the government hospital Lupus Clinic ... tuesday. Almost like being dx all over again EXCEPT this time i will be armed with my knowledge & history and have a starting point ... i explained to my hubby that if i am going thru all this (govt. help in SA) then he is going to sit alongside me as it is his child that i want to carry and we will 'suffer' together ... i do not see him doing it too long but at least he will know what i will be going thru.
Thanks for the kind words ... Vee you always seem to be in the right thread at the right time ...

Nadesico · 04-19-2009, 05:23 PM

i know how you feel about conceving... i want to have kids someday my self but i have made a big choice my and my BF agreed to not have kids... he doesnt want them anyway but i made the choice because i am so tired and feel like i wouldnt be a good mother to them and that my illness would get in the way too much and there a big responserbility, i am not really a responsible person so i dont think i'd be a good mother... i am just wanting to concerntrate on trying to sort myself out with this illness .... and i say good luck to you hunnie i hope it all goes well for you to have kids...

Angel MJ · 04-20-2009, 01:51 AM

HI N
there is still time to think about things like that ... concerntrate on yourself for now ... you are still young

some ladies have spoken of keeping eggs on ice for if they change there mind later ... ?
i am not ready for kids yet ... but i have to get my body into gear if i want to even consider trying ... i am taking responsibility!

Nadesico · 04-20-2009, 09:24 AM

Quote:

Originally Posted by Angel MJ

HI N
there is still time to think about things like that ... concerntrate on yourself for now ... you are still young

some ladies have spoken of keeping eggs on ice for if they change there mind later ... ?
i am not ready for kids yet ... but i have to get my body into gear if i want to even consider trying ... i am taking responsibility!

I am still thinking on it but i think for now i leave the kids... i'm not one for taking things out of my body... i dont want to put my eggs on ice .... it just wouldnt feel right... ..... thats just me for you...

Angel MJ · 04-20-2009, 10:35 AM

and you are absolutely entitled to your feelings ... it is very personal and you will know what is right for you ... there are people that have made the choice not to have kids ... like i said it is a v.personal

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