So i just packed up all the boxes and bags of unwanted stuff from my house- clothes, dishes, etc- and put it on the porch (it's supposed to be there by 730am for the charity truck and I'm not getting up before that, or for a while after that). The fruits- the spoils? the spoiled fruits? - of my cleaning frenzy of the last week or so.
The truack is coming tomorrow for the LFA (Lupus Foundation of America). I hope they come and take it ALL! (FYI, LFA only does pickups in like 3 states so far, but the Vietnam Vets do pickups, too).
Interesting thing happened, which hasn't happened to me in years. i cleaned out my closet before leaving town for xmas, so i could see my useful clothes instead of having that starting at the open fridge kind of experience where you can't find the good stuff for all the condiments and unidentifiable leftovers. then, over xmas, not one but TWO people gave me their castoff clothing, which was very nice stuff.
one person, because their sweaters were too heavy for South Carolina (and i really need sweaters in NJ! except today and tomorrow where we get a freak warm snap thank the lord) and another who is on a bird seed diet and a size 2 for the first time in her life. She gave me her "fat clothes" (all pants, except for 2 skirts and 2 jackets) because she is terrified of ever being so fat as a size 8 again. mmkay.
this happened to me before, 10 or so years ago, when i got about 6 giant hefty bags of clothes from 2 different sources (friend, co-worker) who had both, in this case, gained weight and gave me their "skinny" clothes. interestingly, these clothes that my friends referred to as "skinny clothes" are the same size as the "fat clothes" I just received.
well, it's nice to just be a medium size and have people give you clothes, as long as you can wash the psychic baggage off them.
I've weighed everywhere from 92 to 150 pounds with lupus. when I'm ill, I lose muscle and appetite, and when I'm on the drugs, I retain a lot of water and gain as much as 10 pounds a week. I pretty much just t-shirts and pants with either drawstrings, elastic waists, or both when I'm fluctuating more than a high school wrestler wearing a hefty bag in a sauna.
One thing you hopefully learn through when you have so little control over your appearance is "I am not my body. I live in my body, while I am on this earth, but there is more to me than my body and my physical appearance."
I am not defined my fat clothes, or my skinny clothes, or my ability or lack thereof to fit into them!
www.thesingingpatient.com - funny medical songs
Sunday, January 13, 2008
Friday, December 28, 2007
I'm not sick this Christmas
After sitting around for several hours at my parents' house enjoying
my favorite Christmas present (besides being alive), a Van Halen
Pictorial history book, I began waxing philosophical (Van Halen does
that to me- well, VH with David Lee Roth. Sammy Hagar, not so
much)... I have been reflecting upon the gifts that 2007 brought me.
Which included seeing Van Halen on tour, with Diamond Dave, at
Madison Square Garden. I screamed for 2 hours and smiled for a week.
Also, getting married to my lovemuffin (www.joegmusic.com) and going
to Hawaii on honeymoon (and surfing!). Not necessarily in order of
gratitude, but definitely in increasing order of likelihood (as in
not-a-shot-in-H-E-doubletoothpicks, whodathunkit, and maybe
someday).
It's hard to believe that just over a year ago I had canceled our
wedding due to illness (last October, my 3rd episode of kidney
failure since 1993. I got sprung from the hospital on Halloween-
hospital robe- instant costume!). I'm feeling much better now, partly
because I scaled back my concerts for 2007 and have been more
conscious of preserving my Qi (energy/ life force). For example, I no
longer sleep in the van (partly because I traded it in), and I try to
fly more and drive fewer hours. I also gave up Diet Coke and began
getting acupuncture again (it's been a while). I've felt less
zombie-esque this past month than I have in probably 18 months. So,
who knows, I may even feel human in 08! I just hope it doesn't ruin
my comedy. ;)
listen to funny songs at
http://www.thesingingpatient.com
my favorite Christmas present (besides being alive), a Van Halen
Pictorial history book, I began waxing philosophical (Van Halen does
that to me- well, VH with David Lee Roth. Sammy Hagar, not so
much)... I have been reflecting upon the gifts that 2007 brought me.
Which included seeing Van Halen on tour, with Diamond Dave, at
Madison Square Garden. I screamed for 2 hours and smiled for a week.
Also, getting married to my lovemuffin (www.joegmusic.com) and going
to Hawaii on honeymoon (and surfing!). Not necessarily in order of
gratitude, but definitely in increasing order of likelihood (as in
not-a-shot-in-H-E-doubletoothpicks, whodathunkit, and maybe
someday).
It's hard to believe that just over a year ago I had canceled our
wedding due to illness (last October, my 3rd episode of kidney
failure since 1993. I got sprung from the hospital on Halloween-
hospital robe- instant costume!). I'm feeling much better now, partly
because I scaled back my concerts for 2007 and have been more
conscious of preserving my Qi (energy/ life force). For example, I no
longer sleep in the van (partly because I traded it in), and I try to
fly more and drive fewer hours. I also gave up Diet Coke and began
getting acupuncture again (it's been a while). I've felt less
zombie-esque this past month than I have in probably 18 months. So,
who knows, I may even feel human in 08! I just hope it doesn't ruin
my comedy. ;)
listen to funny songs at
http://www.thesingingpatient.com
Monday, December 10, 2007
Happiness is Good for you
I read a study a while back that said a negative stressor like getting yelled at can negatively affect your immunity for up to 12 hours, whereas a positive experience, such as getting together with friends for fun, can positively affect you immunity for up to 3 days.(It really shouldn't seem like some radical notion that being happy enhances the immune system.
In fact, in the DVD "The Secret," this same principle is touched upon: we have 60,000 thoughts a day (!). Thankfully, the positive ones have more power to affect your reality than the negative ones. Of course if there are no positive thoughts... that could be a problem.
The lesson? it's more important to have fun than it is to avoid stress.
My still newlywed husband and I (not quite 6 months yet) were invited to a big family gathering. We were extended family, as in Joe's sister-in-law's family. We've met a number of these folks before at birthday parties, etc.
So the Patriarch of the Day was Florio, who every year rents a big party bus, gives all his grandkids some money, and we go into New York City (from Yonkers) and go to Toys R Us. Then we go see the big tree at Rockefeller Center. some of us, including me, also stopped into St. Patrick's Cathedral, which is beautiful and has a life-size nativity scene in he sanctuary. I lit a candle ad said a prayer for my Aunt, who is struggling with cancer and related problems.
At the tree, which is also where the ice skating rink is, I was so fortunate to have ended up at that place during the very time that a Tuba Christmas was going on! Every year, for many years now, a bunch of tuba players gather under the Big Tree and play Christmas carols. Only tubas allowed! there were 450 tubas this year! I had heard of this because I played tuba in high school. I never thought I'd see it in first person!
We also saw the friendly neighborhood Spiderman on the sidewalk, 2 cops on horses, and Santa driving a stretch limo.
We all then had a huge Italian dinner at an authentic Italian place that feeds you for 2-3 hours straight. whew.
To top it off, we arranged for our neighbor to visit our little dog with her little dog for a little while and she kept them together for 5 hours! So even our dog had a great day.
We should be immune to anything tomorrow, always a good thing on Monday!
Speaking of fun- hear some funny songs at
http://www.thesingingpatient.com
In fact, in the DVD "The Secret," this same principle is touched upon: we have 60,000 thoughts a day (!). Thankfully, the positive ones have more power to affect your reality than the negative ones. Of course if there are no positive thoughts... that could be a problem.
The lesson? it's more important to have fun than it is to avoid stress.
My still newlywed husband and I (not quite 6 months yet) were invited to a big family gathering. We were extended family, as in Joe's sister-in-law's family. We've met a number of these folks before at birthday parties, etc.
So the Patriarch of the Day was Florio, who every year rents a big party bus, gives all his grandkids some money, and we go into New York City (from Yonkers) and go to Toys R Us. Then we go see the big tree at Rockefeller Center. some of us, including me, also stopped into St. Patrick's Cathedral, which is beautiful and has a life-size nativity scene in he sanctuary. I lit a candle ad said a prayer for my Aunt, who is struggling with cancer and related problems.
At the tree, which is also where the ice skating rink is, I was so fortunate to have ended up at that place during the very time that a Tuba Christmas was going on! Every year, for many years now, a bunch of tuba players gather under the Big Tree and play Christmas carols. Only tubas allowed! there were 450 tubas this year! I had heard of this because I played tuba in high school. I never thought I'd see it in first person!
We also saw the friendly neighborhood Spiderman on the sidewalk, 2 cops on horses, and Santa driving a stretch limo.
We all then had a huge Italian dinner at an authentic Italian place that feeds you for 2-3 hours straight. whew.
To top it off, we arranged for our neighbor to visit our little dog with her little dog for a little while and she kept them together for 5 hours! So even our dog had a great day.
We should be immune to anything tomorrow, always a good thing on Monday!
Speaking of fun- hear some funny songs at
http://www.thesingingpatient.com
Wednesday, December 5, 2007
the water cure
here's that great report i mentioned yesterday about how vital water is to our well being.
I drink a lot of purified water!
i bought a sports bottle purifier at h2ofilters.com and carry it everywhere. i can refill it just abotu anywhere, because it cleans it up, so i don't have to buy bottled water, and i don't have to carry around big huge gallons on roadtrips.
water report:
http://www.newstarget.com/Report_water_cure_0.html
I drink a lot of purified water!
i bought a sports bottle purifier at h2ofilters.com and carry it everywhere. i can refill it just abotu anywhere, because it cleans it up, so i don't have to buy bottled water, and i don't have to carry around big huge gallons on roadtrips.
water report:
http://www.newstarget.com/Report_water_cure_0.html
Tuesday, December 4, 2007
Lupus gene found?
The below quoted article (which i have shortened) is calling for DNA samples from lupus patients. All you have to do is ask your doctor about how to do this, then give a blood sample (I don't know about you but I do that every 3 months anyway).
I am skeptical about genetics being the cause of lupus. I think it's toxins in our food air and water. but hey, if they find a gene therapy that helps, then great. Let's go at it from all angles.
Lupus Gene Finding Prompts Call for More DNA Samples. Wellcome Trust Sanger Institute Study
12/3/2007
Wellcome Trust researchers have identified a key gene involved in the disease lupus, which affects around 50 000 people in the UK, most of them women. The lead researcher behind the study has called for more patients to volunteer DNA samples to enable them to further study the underlying causes of the disease.
I am skeptical about genetics being the cause of lupus. I think it's toxins in our food air and water. but hey, if they find a gene therapy that helps, then great. Let's go at it from all angles.
Lupus Gene Finding Prompts Call for More DNA Samples. Wellcome Trust Sanger Institute Study
12/3/2007
Wellcome Trust researchers have identified a key gene involved in the disease lupus, which affects around 50 000 people in the UK, most of them women. The lead researcher behind the study has called for more patients to volunteer DNA samples to enable them to further study the underlying causes of the disease.
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