Lupus Support - Newbie to the Group

Author

Newbie to the Group

Steveo

2006-06-04, 9:30 am

Good day all, I am a 33yr old male with Lupus SLE, MPA, Reocurring Poly
condritis <=SP? and Kidney desease. I was diagnosed in Feb of 2003
after 3 months or worsening pnemonia. Seems I lost 20% of my kidneys
before they figured it out. So the group now has another male, I hope
that I can help and learn from everyone else. I research for a living
so I know alot about my particular issues. I have been through the
normal treatment so far. I was on Cytoxin for a few months till we
learned I was allergic to it, so now I am on Cellcept, Pred,
furosemite, Lipitor, Leviquin, and something else, I just can't
remember right now. I have gone through a dramatic weight gain as well
as becoming very moody while on pred. At first I had a lot of self
pitty but after seeing my 2yr old visit me in the hospital (my fist
round), I decided to never let my issues affect my life any more than
they have to and to never let my son see me other than positive..
After all what doesn't kill you does make you stonger.

-Steve

Sherry

2006-06-04, 9:30 am

Steve,
Welcome to the group. Sorry that you need to be here but this is a great
place to hang out when you need info, have info to share or just need
someone that understands.

Sherry

Maggie

2006-06-04, 9:30 am

Welcome Steve!

I hope you'll find the support you need here. You have the right
attitude and it's great to see that you won't let this disease drain
you mentally & emotionally, even when it does drain you physically.
Your kids will remember how you handle everything and they'll be
stronger because you are. :D God bless you and your family!

Maggie

Shelagh

2006-06-04, 9:30 am

Welcome and just to give you a bit of positive info, I too lost a great =
deal of renal function prior to my diagnosis of classic SLE and over the =
next decade with treatment on pred and antimalarials (as well as many =
bp/cardio meds), I regained that function (which is not unheard of at =
all) and now my renal numbers are primo!! so all is not lost just cause =
for now it looks grim.... given time and compliance and <*I believe*> =
a positive attitude towards living with lupus, anything is possible =
imo!!=20
I have made it through many crises and amazingly am still 'keeping =
on'..... and according to my first prognosis I shouldn't even be alive =
today lol!!=20
So don't give up on yourself at any point and just keep on keeping on!!
I think you are right about the 'positivity' necessary, not only to show =
your young son but to get through the tough times ... a real MUST imo =
with all these autoimmune illnesses!!
Wishes of good luck to you!
hugs,
Shelagh
http://clik.to/lupus

"Steveo" <sjarrell@optonline.net> wrote in message =
news:1149169299.784533.164500@j55g2000cwa.googlegroups.com...
> Good day all, I am a 33yr old male with Lupus SLE, MPA, Reocurring =
Poly
> condritis <=3DSP? and Kidney desease. I was diagnosed in Feb of 2003
> after 3 months or worsening pnemonia. Seems I lost 20% of my kidneys
> before they figured it out. So the group now has another male, I hope
> that I can help and learn from everyone else. I research for a living
> so I know alot about my particular issues. I have been through the
> normal treatment so far. I was on Cytoxin for a few months till we
> learned I was allergic to it, so now I am on Cellcept, Pred,
> furosemite, Lipitor, Leviquin, and something else, I just can't
> remember right now. I have gone through a dramatic weight gain as =
well
> as becoming very moody while on pred. At first I had a lot of self
> pitty but after seeing my 2yr old visit me in the hospital (my fist
> round), I decided to never let my issues affect my life any more than
> they have to and to never let my son see me other than positive..
> After all what doesn't kill you does make you stonger.
>=20
> -Steve
>

Steveo

2006-06-04, 9:30 am

Thank you to everyone for the warm welcome. I will admit I have had my
share of depressed days but the good definetly out weights the bad. My
wifes best friend has Lupus so I have had a person to relate and talk
to from the begining. I will admit that I hate being on Pred and now I
have just gotten off the stuff after 3years. Nice to see my face go
back to normal shape. I do have the sun allergy, I love being
outside................................ but I must watch it now. I was
a smoker and a drinker, I do neither now. My diet is ten times better
than it was, I just really hate being so tired all the time. I use to
be very active. I still work 40-50hrs a week and do side jobs all the
time. In stead of cutting back and resting more I find that I am doing
the opposite and working more and more.

Does anyone else feel happy to just make it through the work week? I
am exhausted by the end of the week.

-Steve

Maggie

2006-06-04, 9:30 am

Steveo wrote:
<snip> I will admit I have had my
> share of depressed days but the good definetly out weights the bad. <snip>

There's no shame in getting down, the shame is in not fighting your way
back....

<snip> I will admit that I hate being on Pred and now I
> have just gotten off the stuff after 3years<snip>

The prednisone is the worst and the best all in one hard to swallow
little pill. That little bugger sticks to your tongue and then makes
food stick to the rest of you. That little bugger has also saved &
prolonged many lives. I'm just glad you're finally off of it. It
sounds like your energy is getting better too. Although I don't work,
I know that having less energy just comes with the territory.

Maggie

Beverley

2006-06-04, 9:30 am

Welcome! There's a few guys around here and a few spouses.

Sometimes just knowing someone else has been through the same things seems
to help. Please be careful about over doing it because a tired, run-down,
body has to fight harder if something goes wrong. It seems to me that you
are becoming a workaholic and that can be dangerous. Work hard and remember
to play hard, too! Your son needs a "healthy" happy daddy who spends time
with him not just a financial provider.

Bev

"Steveo" <sjarrell@optonline.net> wrote in message
news:1149169299.784533.164500@j55g2000cwa.googlegroups.com...
> Good day all, I am a 33yr old male with Lupus SLE, MPA, Reocurring Poly
> condritis <=SP? and Kidney desease. I was diagnosed in Feb of 2003
> after 3 months or worsening pnemonia. Seems I lost 20% of my kidneys
> before they figured it out. So the group now has another male, I hope
> that I can help and learn from everyone else. I research for a living
> so I know alot about my particular issues. I have been through the
> normal treatment so far. I was on Cytoxin for a few months till we
> learned I was allergic to it, so now I am on Cellcept, Pred,
> furosemite, Lipitor, Leviquin, and something else, I just can't
> remember right now. I have gone through a dramatic weight gain as well
> as becoming very moody while on pred. At first I had a lot of self
> pitty but after seeing my 2yr old visit me in the hospital (my fist
> round), I decided to never let my issues affect my life any more than
> they have to and to never let my son see me other than positive..
> After all what doesn't kill you does make you stonger.
>
> -Steve
>

Ruth Tay

2006-06-04, 9:30 am

In article <1149181233.813957.246210@i39g2000cwa.googlegroups.com>,

Welcome to the group. Have had lupus for 25 years now and I still work.
We own an Inn. Some of the advantages of having Lupus is knowing
that because the sun is poisonous to me there is plenty of time to
stay inside and do all the baking and bookkeeping that keeps the
place going. On the good side we have a staff that are great to
be around and make the work pleasant. On the bad side is the
prednisone that I have to take. Back up to 15 mg, now but you are
right it is good to be busy and also a few days off now and then
are welcome good luck ruth

"Steveo" <sjarrell@optonline.net> wrote:

> Thank you to everyone for the warm welcome. I will admit I have had my
> share of depressed days but the good definetly out weights the bad. My
> wifes best friend has Lupus so I have had a person to relate and talk
> to from the begining. I will admit that I hate being on Pred and now I
> have just gotten off the stuff after 3years. Nice to see my face go
> back to normal shape. I do have the sun allergy, I love being
> outside................................ but I must watch it now. I was
> a smoker and a drinker, I do neither now. My diet is ten times better
> than it was, I just really hate being so tired all the time. I use to
> be very active. I still work 40-50hrs a week and do side jobs all the
> time. In stead of cutting back and resting more I find that I am doing
> the opposite and working more and more.
>
> Does anyone else feel happy to just make it through the work week? I
> am exhausted by the end of the week.
>
> -Steve

Shelagh

2006-06-04, 9:30 am

I am happy to make it to the end of each day at this point!! lol!
I am exhausted by bedtime which is 10 or 11 pm nightly!!
I did much more when I was newly dx'd and younger I know and filled my =
days with homemaking, volunteering re 2 growing kids we adopted, and =
just getting through each and every day!! I used to ride my 10 speed =
bicycle everywhere I went with my daughter on the back and my son on his =
beside me and so I was in good physical condition and obviously much =
healthier before another 20 years of lupus hit this body and wreaked it =
havoc to the point that I don't get out as much cause I can't and I am =
happy to wake up every morning and get up out of my bed without pain and =
carry on through each and every day literally one day at a time; I do =
remember doing as much as you are doing... maybe not AS much but a lot =
more and even then I was exhausted by bedtime..... I have always needed =
12 hours nightly and still do and that is how I make up for my rest.... =
never been a napper during the day and don't plan to start at my age =
either; I think there is a happy medium between work and play and for =
me, being retired with my husband now, we do a good mix that works for =
us; if you are a happy camper and feel that what you are doing is =
working for you and your family then I say 'go for it'!! whatever works =
individually is what you should do and not worry about comparing your =
lifestyle to others; lupus is such an individual illness and all the =
treatments and symptoms and flares are also just that! not one lupus =
patient gets the same course of illness as another and nor are they =
treated as another is..... so if you are functioning well in your busy =
work weeks and staying well during all those hours then it must be =
working for you!=20
And then on the other hand, if you are burnt out at the end of every =
week and don't have the energy to play with your son on the days off you =
have then maybe you should look into curtailing some of the work hours =
and spend a bit more time resting so you can be active for your son when =
he needs you for quality times.
Good luck with all this and dealing with your illness.
Nope, it isn't easy but I don't believe we are given more than we can =
handle either... <*well.....maybe sometimes <g>*>
hugs, Shelagh
http://clik.to/lupus

"Steveo" <sjarrell@optonline.net> wrote:

> Thank you to everyone for the warm welcome. I will admit I have had =
my
> share of depressed days but the good definetly out weights the bad. My
> wifes best friend has Lupus so I have had a person to relate and talk
> to from the begining. I will admit that I hate being on Pred and now =
I
> have just gotten off the stuff after 3years. Nice to see my face go
> back to normal shape. I do have the sun allergy, I love being
> outside................................ but I must watch it now. I =
was
> a smoker and a drinker, I do neither now. My diet is ten times better
> than it was, I just really hate being so tired all the time. I use to
> be very active. I still work 40-50hrs a week and do side jobs all the
> time. In stead of cutting back and resting more I find that I am =
doing
> the opposite and working more and more.
>=20
> Does anyone else feel happy to just make it through the work week? I
> am exhausted by the end of the week.
>=20
> -Steve

Krista

2006-06-05, 2:34 am

Steveo wrote:
> Good day all, I am a 33yr old male with Lupus SLE, MPA, Reocurring Poly
> condritis <=SP? and Kidney desease. I was diagnosed in Feb of 2003
> after 3 months or worsening pnemonia. Seems I lost 20% of my kidneys
> before they figured it out. So the group now has another male, I hope
> that I can help and learn from everyone else. I research for a living
> so I know alot about my particular issues. I have been through the
> normal treatment so far. I was on Cytoxin for a few months till we
> learned I was allergic to it, so now I am on Cellcept, Pred,
> furosemite, Lipitor, Leviquin, and something else, I just can't
> remember right now. I have gone through a dramatic weight gain as well
> as becoming very moody while on pred. At first I had a lot of self
> pitty but after seeing my 2yr old visit me in the hospital (my fist
> round), I decided to never let my issues affect my life any more than
> they have to and to never let my son see me other than positive..
> After all what doesn't kill you does make you stonger.
>
> -Steve

Hi Steve,

I'm Krista, I'm 30 years old, I've been sick for 3 years but they just
diagnosed me in December. I finally tested positive for Lupus and have
Anti-Phospholipid Syndrome, Fibromyalgia, all that fun stuff. Anyway,
sorry you're sick and have to be here, but welcome and glad to meet
you! I've found that there are some smart, knowledgeable, and loving
people around here, I'm pretty new too.

We give hugs here.

(((hugs)))

Krista