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Medical Forum / Diseases and Disorders / Lupus / July 2009

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Lonely place

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George Parton - 26 Jul 2009 22:58 GMT
What a lovely, lonely place!  Everybody is kicking back enjoying the
summer I guess.

I have had some changes in my lupus trip. No more plaquenil,
mycophenilate (cellcept) and I'm down to 15 mgs of prednisone per day
headed for 10. Other meds that weren't lupus related have also been
dropped.  The results are I feel like crap and have lots of pain but
with the help of stimulants I get up and get going. After some activity
things get better by afternoon or early evening.

I miss hearing from you. How about posting occasionally?

Back to enjoying the rest of our 111 degree day!

George
SweetPea - 26 Jul 2009 23:50 GMT
> What a lovely, lonely place!  Everybody is kicking back enjoying the
> summer I guess.
[quoted text clipped - 11 lines]
>
> George

I agree   what a lonely place.  Instead of enjoying the summer   etc.
I too have been cutting down on lupus drugs and trying to get over a
broken femur that I
smashed almost 3 months ago.  The healing is of course hampered by the
darned old lupus.  [You can imagine what strong language I really am
thinking]  Unlike
Phoenix we have been having a cold  foggy summer.  We live on the
coast and have an Inn in Northern California.  Our guests come and
expect  70 degrees and
get 60.....We always know who the tourists are  by their shorts and
blue legs......The local merchants stock up on wooly jackets.  We live
inland about 1/4 mile
and all we can see is lots of pine trees that are grey with fog.  I
NEED Janers jokes..........  ruth
George Parton - 29 Jul 2009 22:20 GMT
>>What a lovely, lonely place!  Everybody is kicking back enjoying the
>>summer I guess.
[quoted text clipped - 26 lines]
> and all we can see is lots of pine trees that are grey with fog.  I
> NEED Janers jokes..........  ruth

Ruth,
Your place sounds heavenly!  I have just spoken to my sister up on the
Olympic peninsula and they are having outrageous heat, over 100 degrees
which is unheard of up there.
Are you in a cast and if so how long must you leave it on? Heat would
probably not be fun with a cast on.
Stay in touch, tanks for your response.
George
Andy - 27 Jul 2009 15:20 GMT
>What a lovely, lonely place!  Everybody is kicking back enjoying the
>summer I guess.

Today it was summer from 10:30 till noon. Tomorrow is predicted to be
Autumn - and I noted that our neighbour has got a huge crop of mushrooms
on their lawn!
Signature

Andy Taylor [Chair, N E Lupus Group].
<URL:http://www.northeastlupus.org.uk>

Shelagh - 27 Jul 2009 20:19 GMT
"Andy" <andy@kitzbuhel.demon.co.uk> wrote in message
I noted that our neighbour has got a huge crop of mushrooms
> on their lawn!
> Andy Taylor [Chair, N E Lupus Group].
> <URL:http://www.northeastlupus.org.uk>

mmmm?!
what kind  ??...... do you know ?!
..... Kidding!!!
it was just 'something to say' as my summer is uneventful in any 'fun sense'
so far...
although we did get our boat into the water and were out last night!
Lovin it!!
Also got a good berth at our marina.. handy to the ramp and umbrella
covering.. so can hop and skip off the ramp from one covering to our boat
covering... and stay out of those rays...
also
am just LOVING my coolibar hat and top! the best ever... cool, light weight
and soft!! a bamboo cotton that wicks well, is salt water resistant and wash
and wear... dries instantly I found out with a wave from my MOTH who decided
I needed cooling off lol.... and it felt so good getting soaked... but the
shirt and hat dried so fast!! and no stains.. very nice!!

So other than the prostate cancer with a lousy staging, and now diabetes 2
my husband has been dx'd with,
<borderline diabetes exacerbated by the cancer the doc says..we'd been doing
so well controlling it with diet... till the dam C!>....
we are having a great old time with our boat... good distraction and very
necessary!!

My lupus is not liking the heat wave we are having so we are attempting to
do our fishing when the sun goes behind that handy hill at the marina... and
staying in the shade protected area from it... it works well for us and we
can still swim at that time, it is so warm, the air and the water... so
nice!!  and I do like a private swimming area.... I am not one for public
beaches!
We have our own swimming hole just down the street and off the big rocks
that heat up in the sun so by evening are perfect to lie on and to swim
from... and when the tide is up it is wonderful....
so
anyone else going to share their summer time fun?!
hugs to all...
especially you lonely George!
I really do think we all feel that way in the summer.... just can't do what
''they'' all do... during the regular hours that is... make your own fun
during the hours that you feel well enough to do anything, and when the sun
is gone... what can I say?!.... gotta roll with the punches!
from
Shelagh
Andy - 27 Jul 2009 21:02 GMT
>"Andy" <andy@kitzbuhel.demon.co.uk> wrote in message
>I noted that our neighbour has got a huge crop of mushrooms
[quoted text clipped - 4 lines]
>mmmm?!
>what kind  ??...... do you know ?!

Dunno. But there's definitely NOT a gnome sitting on the top.
Signature

Andy Taylor [Chair, N E Lupus Group].
<URL:http://www.northeastlupus.org.uk>

Shelagh - 27 Jul 2009 21:44 GMT
>>Shelagh <systemiclupus@shaw.ca> wrote
>>"Andy" <andy@kitzbuhel.demon.co.uk> wrote in message
[quoted text clipped - 7 lines]
>
> Dunno. But there's definitely NOT a gnome sitting on the top.

LOL, well thank goodness for that...
I was really getting concerned for your safety!! <g>
hugs,
Shelagh ~ Lupus - Invisible In Plain Sight
<url: http://members.shaw.ca/systemiclupus>
George Parton - 29 Jul 2009 22:53 GMT
> "Andy" <andy@kitzbuhel.demon.co.uk> wrote in message
> I noted that our neighbour has got a huge crop of mushrooms
[quoted text clipped - 47 lines]
> from
> Shelagh

Shelagh, you certainly have a great disposition!  Your comments are
uplifting.

Hot weather gear?  Thank God for it.  I am so pleased that I can still
get out and do things, as far as my infirmities allow. I have become
quite a pitch man for the total cover up style.  Folks find it hard to
believe how much cooler it is than shorts and T-shirts.  These clothes
may make one a little gamy though, requiring midday changes sometimes.
Odorific, you know.

I'm sorry your husband is having such a bad time.  I was under the
impression that he was doing better. Hopefully they will be able to get
his prostate settled down so it won't have as much of an impact. As for
his diabetic diet, I kinda enjoy all that protein, especially that
seafood available where you live. I hope he likes it.

As for summer activities, we just keep on keepin' on.  115 yesterday and
life goes on.  People are out and about doing stuff, complaining but
still out there.  My bride Rainy says "we haven't had to shovel any of
it yet!"  She is a native and tough as nails. 8>)  It does this every
year so it's no surprise.

Your "private" swimming hole sounds great.  Makes one wonder just how
"private" it is!  Hehe

Continue to enjoy.  Thanks for your nice response. Stay in touch.

George
Shelagh - 30 Jul 2009 01:57 GMT
"George Parton" <GEParton@netscape.net> wrote in message news:px3cm.49337
> Shelagh, you certainly have a great disposition!  Your comments are
> uplifting.
[quoted text clipped - 24 lines]
>
> George

Well thank you kindly George.... lol... a good disposition is a good thing
my Gram used to say.... so I'll take that as a compliment....
and yes, <he he>  our private swimming hole is very private lol... as it is
when we swim from the boat.... so very private <g> !!
however
we are having -- what is for us spoiled people here on the coast -- a heat
wave...
with temps up to 35 highest...
I have a daughter in northern Alberta with her family and they actually get
temps in the 40's so I do know the difference and count myself lucky....
and also yes to your comment re our fresh seafood,
we do indeed enjoy the seafood, we love to go out in our boat and have
always enjoyed fishing and all that goes with it... the camping, RVing,
cabins and boats... fishing poles and good reels and all... and love to go
out and
catch the white fish fresh right out front here of us, on the bay..... all
the 'cods' there are along with the sole, red snapper and of course the
salmons, coho and spring and all... along with the prawn traps we set and
catch a bunch of... they are a good size and so good as they are down very
deep, 600 feet and deeper and so much like the snappers have a great firm
texture  to their meat and are never soft or mushy like the warmer lake
trout can be.... I like cold water/ocean fish best... as well as the kokanee
that like the northern lakes here in BC... we used to catch them on holidays
with our kids all the years they were growing up ... great fun!

We also raised 2 kids that now love fishing and boating which is great when
they come to see us here on the island.... lots of fun!

I don't know how you do it in those high temps though George, I would be a
'shut in' for sure... or collapsing every block or so... lol... it makes me
feel so weak and ill so I avoid it as much as is possible and go out when
the sun goes down, then we don't have to 'meet' face to face, so to speak
<g>...

Actually re my husband Wayne, he was doing okay after digesting the
Dx....which was a heck of a shock... < to us both, to put it mildly>
and then his scans came back clean and he isn't metastasized at all or
anything but his staging numbers suck and so he isn't a surgical
candidate... you might think that is good, but the only alternative --
<along with the hormone withdrawal therapy he has been on since we got the
word, day one>
-- is  2 or 3 cycles
<one cycle consisting of 3 weeks of 5 days each, mon to fri of 200 rads per
day and not exceeding 8000 rads per patient per RT, which is up to the
radiation oncologist>
of radiation therapy... or Radio Therapy/RT as they also call it,  not a fun
thing to undergo from what I've been told and what I'm reading but maybe
then he'll be done with it too...
however, as well
it is supposedly 'as curative' as the radical surgery they offer, the
prostatectomy through the retro pubic incision....
but you don't get the  nerve sparing benefits of that nor the lymph node
biopsies as they go in....
the CT looked at the nodes and tissues in the pelvic area and said it is
clean.. but a biopsy is a better thing for sure!....
so  we can only hope and pray!   Then the prostate cancer exacerbated his
borderline diabetes he has had for years, a genetic thing for him, and we've
managed it well with diet... and the sugar levels wouldn't go under control
until we finally got the Metformin dose upped to 850 mg. twice a day and it
is doing the job now.
Now I need to get the prostate diet to work with the diabetes diet... and
all will be well on the home front .....

We are waiting for the RT call now, to 'map out his tumor' and set up the
cycles... and then begin them... once his lab test is back from Aug. 6th and
his PSA is .1 or lower they will be in touch is what we were told.... again,
we are waiting and hoping.... we'd like an end to this horrible summer we
are living... one summer I'd like behind us ASAP for sure!!

To top it off.. the icing on the cake this week for me... another bout of
bladder infection!
Oh joy!! I have had a nice hiatus from it and it is back again... I didn't
miss it one bit and am madder than a hatter that it showed up... at least 2x
annually right now like clockwork.. used to be twice that or more at one
point so I am actually lucky  ATPIT.... go figure lol!

Anyway, keep on truckin George... stay well and have a wonderful summer with
your tough as nails wife!  wonderful that you have each other... helps to
bolster moods and the like  --  I   know!!
----
hugs,
Shelagh   ~    Lupus - Invisible In Plain Sight
<url:  http://members.shaw.ca/systemiclupus>
 
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