 Re: New to the Group
Welcome Diane!
and we welcome all your 'whining and even offer cheese if you like' lol! =
=20
That is why this group exists;=20
we all 'get it' and do understand all your aches and pains and feelings =
of low self esteem at times and all the disability you can go through =
with this illness lupus.. it is a nasty diagnosis to get and you have =
to have the strength to live with it.. sounds like you do actually; as =
like most of us, you were a very busy and active person in your 'pre =
lupus life' and those energies and motivating factors that pushed you =
into your activities then are the same ones that will help you live =
successfully with lupus! believe it or not!=20
Unfortunately, I have had SLE since I was about 12 the pros think with =
my history and labs and presenting symptoms at my diagnosis time; and I =
am now heading onto 54 and living as quality filled a lifestyle as is =
possible and enjoying it right now so there is light at the end of your =
tunnel too!
I have been through 'it all' when it comes to symptoms and side effects =
and treatments, so many surgeries, aches and pains and many meds...=20
Your treatment is crucial! You should have a doctor you feel good with =
and can talk to openly! IMO the most important aspect of living with a =
chronic illness is having the PCP in place so whenever an emerg. arises =
you have someone to call or to meet you at ER or whatever is necessary =
ATPIT!
I have a website at: http://clik.to/lupus and it has all the =
different angles of living with lupus laid out on different pages.. =
hopefully it will help you..we also have a map there on the right side =
of the site as it opens.. we are all listed on the map and if you will =
post yourself we can 'see' where you are geographically too.. I am =
challenged when it comes to imagining a state in the US or a city in a =
different country/continent. looks like you are from 'down under' by =
your email addy?.. we have a doctor in our group, a very helpful yet =
very sick one who is also from there, named Lyndal or LPN as I call =
her.. you will find her responses, if she is well enough to write to =
you, very helpful!=20
Anytime you have questions or need support just post here and/or contact =
anyone of us personally by flagging our name in the subject line and we =
will send you as much support as we can offer.
Re your diskectomy and laminectomy and fusions I can totally relate! I =
have had 3 major surgeries needed to rebuild my spine and so have BT and =
DT and yes, it was hell! I had altogether over 9 months total in =
hospital: 3 months pre marriage with my husband of 34 years and over 6 =
months post marriage when my 2 kids, adopted, were just babies! to =
finish the job.. so I can literally 'feel' where you come from; Re =
your eyes? I am having central vision loss right now and have reached =
the peak of loss I hope but will be at this level now for the rest of my =
life; both eyes involved and it really hit me hard to go through it! A =
huge challenge involving my having to change my methods of using the PC, =
reading novels and driving restrictions!
It affects your entire life and then some so I do understand also, some =
of what you have gone through with your eye troubles.
Please just put your feelings out here and let us, as a group attempt to =
answer you and try to help if we can.. as I said we have all been =
there and done that in some way or another and so most of us do see =
where you are at and can relate to how lousy you must feel!=20
But remember too, you have those inner strengths thankfully, due to =
being type A personality; oddly enough studies have been done and most =
lupie patients are the 'gung ho' type of people who love to do and to =
accomplish things and almost always perfectionists to some degree as =
well as possibly obsessive over some things; you have to learn to live =
with the situation but without losing your drive at the same time!=20
There is a 'happy balance' that you will find down the road a bit and I =
wish you all the luck in getting to it!=20
It is different for everyone living with lupus, a very individual =
illness and so no one will be able to relate exactly; but the =
inflammation and pain and aches and fatigue are generalized pretty much =
through all patients and we all still get them at times as that is the =
nature of the illness: chronic, inflammatory, systemic and =
multifaceted!! IOW? Nothing is sacred lol!!
Good luck and remember to just ask away in any form you like! whining or =
not and you will get responses from us!
My hugs for you,
from
Shelagh
http://clik.to/lupus
"Diane" <rwh81506@bigpond.net.au> wrote in message =
news:1153146871.222141.42940@75g2000cwc.googlegroups.com..
>I was diagnosed with Lup[us in 1993 I had always been a very active
> person. Classical Ballet, Swimming competively, Horse Riding and
> Yachting.I was a very happy person with loads of self-confidence.
> In about 1998, I started to get aches and pains in all my joints and
> muscles along with constant fatigue My husband eventually left me for
> some one youngerr I started to feels as though I was a hyphchondiac! =
At
> last one lady suggested I go to see and Immunoligist and after a few
> Blood Tests , I found that I had, at last a name to put on why I was
> feeling likeI was. Mind you, ignorance is bliss. I had no idea what =
was
> to come!
> I have had 4 joint replacements, 2 fused joints and a Laminectimy and
> Disctectomy.I have lost the vision in my left eye and because it
> continued to be painful, had to have the whole eye removed and I now
> wear a Prostheseis. This hasn't done much for my self-esteem which was
> pretty low anyway. None of my family or friends seem to understand my
> spcecial needs and, I think, I use the name "lupus" to get of =
attending
> vareious functions.
> I have given them all "pamphlets" to read but they don't seem to be
> very interested in reading them!
> I know, quite well, that I sound as though I am whingeing. That is why
> I thought a support programme like this may be of some help to me. I =
am
> not unhappy all the time and it would be quite fun to share the
> "miseries" of this affliction and to have a laugh about it. After all,
> there are many times when I think to myself, "This would be funny, if =
I
> didn't feel so alone."
> Surely there are plenty of fellow sufferers out there who would like =
to
> share heir problems and, perhaps, a chuckle or two about it all.
> Hugs for Everyone Concerned
> Diane
> rwh81505@bigpond.net.au
>
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