Day 3 of "Health Adventures" (Day 1 of vlog. I didn't really plan this out...)
http://www.thesingingpatient.com
http://www.thesingingpatient.com
Friday, September 26, 2014
Standing at a Crossroads...
Okay
moment of complete honesty here. I had such a great time performing in
Delaware on Friday, Connecticut on Saturday, going to an 80s party and
singing all day on Sunday, and playing in Connecticut again on Monday
(and then driving home that night). I wouldn't change a thing. I had a
blast.
But I was so wiped out that I slept until 6 PM Tuesday. Yeah- went to bed at 2 AM and slept until 6 PM.
There's no bed like home. Noise machine, perfect mattress, perfect pillow, perfect temperature ... ceiling fan overhead, perfect hubby, perfect sweet doggie curled up next to me.
When I am comfortable, I can easily sleep for 12-16 hours nonstop. I'd rather not. It was a beautiful day today and I pretty much missed it. But I needed to refuel.
I'm always looking at ways to improve my health and reclaim more of my energy- Because there's so much I want to do. I want to write more songs. I want to learn to be a better tap dancer. I want to record CDs ... I want to write books. I want to do a one woman show. I can't do all that stuff if I'm asleep. But I can't stay healthy if I do too much.
Such a quandary and one I've been dealing with since 1992. Doubly frustrating, because before all this happened I was like the energizer bunny- unstoppable.
And frankly, I wouldn't have made it through the weekend without my ADD med (which I take sporadically). I'm supposed to use it to focus, so I can do odious left-brain tasks like bookkeeping and answering email, but I was using it just to have enough energy to get through everything and not fall asleep at the wheel on the way back to the motel (it is a low-grade amphetamine).
This week (Wednesday, 9/24), I'm starting a new supplement and food regimen. I hope that it helps me to reclaim some of my energy and health. I'm happy I'm able to do what I am able to do (largely because we don't have kids, I'm self-employed, and when I need to I can sleep 16 hours). But I really want to be my old self again - full of energy, and sleeping only eight or nine hours and feeling refreshed.
Oh feeling rested and refreshed! That would be great. And I'm going to aim for it and I will keep searching until I find it. Whatever it takes for me to be completely healthy.
Rheumatologists tell us lupus patients that if we use the medications we can lead a "normal life." Well, their idea of a normal life means that we get to live to be 60 or 70 or 75 years old. But it also means will be on medication all the time with horrible side effects (including hair loss, a big moon face and massive weight gain, to name a few)- and we also might die of a brain infection or incurable pneumonia at age 50 because of the medications that are used to suppress the immune system.
Okay, yes, that's a huge improvement over way things were 60 years ago when there was no treatment at all for lupus. Back then, it was a death sentence. You would be dead within five years of diagnosis. But I want quality of life not just quantity.
For 20 years, I have tried every form of alternative medicine you can think of & supplements and diet changes. A lot of it has helped and I've managed to stay off the prednisone quite a bit longer than most people who have lupus - and certainly anyone I've met who has lupus with the severity that I did. I've never been on it for more than 10 months at a time.
My choices for maintenance drugs are:
1) CellCept which can lead to a fatal brain infection and also gives you increased risk of lymphoma (and gives me 100% chance of diarrhea)...
2) benlysta which as I understand it allows you to take a reduced amount of prednisone. I'm not on prednisone.
3) plaquenil which mostly helps with skin and joint problems but not kidney problems. And may cause blindness.
4) Prednisone (low dose). Start with high dose to get things under control, then taper to as low a dose as possible, while still keeping disease under control.
I do not like any of these options, to be frank.
I'm stubborn and demanding and I will get my health back. I've had a couple years 95, 96 and 2003 2004 where I really felt great and was medication-free. So I know it's possible. I recently quit my teaching position in Westfield at a guitar store so that I would have more time to devote to my health. Time to dig in. Wish me well! I will keep you updated.
Carla
http://www.thesingingpatient.com
But I was so wiped out that I slept until 6 PM Tuesday. Yeah- went to bed at 2 AM and slept until 6 PM.
There's no bed like home. Noise machine, perfect mattress, perfect pillow, perfect temperature ... ceiling fan overhead, perfect hubby, perfect sweet doggie curled up next to me.
When I am comfortable, I can easily sleep for 12-16 hours nonstop. I'd rather not. It was a beautiful day today and I pretty much missed it. But I needed to refuel.
I'm always looking at ways to improve my health and reclaim more of my energy- Because there's so much I want to do. I want to write more songs. I want to learn to be a better tap dancer. I want to record CDs ... I want to write books. I want to do a one woman show. I can't do all that stuff if I'm asleep. But I can't stay healthy if I do too much.
Such a quandary and one I've been dealing with since 1992. Doubly frustrating, because before all this happened I was like the energizer bunny- unstoppable.
And frankly, I wouldn't have made it through the weekend without my ADD med (which I take sporadically). I'm supposed to use it to focus, so I can do odious left-brain tasks like bookkeeping and answering email, but I was using it just to have enough energy to get through everything and not fall asleep at the wheel on the way back to the motel (it is a low-grade amphetamine).
This week (Wednesday, 9/24), I'm starting a new supplement and food regimen. I hope that it helps me to reclaim some of my energy and health. I'm happy I'm able to do what I am able to do (largely because we don't have kids, I'm self-employed, and when I need to I can sleep 16 hours). But I really want to be my old self again - full of energy, and sleeping only eight or nine hours and feeling refreshed.
Oh feeling rested and refreshed! That would be great. And I'm going to aim for it and I will keep searching until I find it. Whatever it takes for me to be completely healthy.
Rheumatologists tell us lupus patients that if we use the medications we can lead a "normal life." Well, their idea of a normal life means that we get to live to be 60 or 70 or 75 years old. But it also means will be on medication all the time with horrible side effects (including hair loss, a big moon face and massive weight gain, to name a few)- and we also might die of a brain infection or incurable pneumonia at age 50 because of the medications that are used to suppress the immune system.
Okay, yes, that's a huge improvement over way things were 60 years ago when there was no treatment at all for lupus. Back then, it was a death sentence. You would be dead within five years of diagnosis. But I want quality of life not just quantity.
For 20 years, I have tried every form of alternative medicine you can think of & supplements and diet changes. A lot of it has helped and I've managed to stay off the prednisone quite a bit longer than most people who have lupus - and certainly anyone I've met who has lupus with the severity that I did. I've never been on it for more than 10 months at a time.
My choices for maintenance drugs are:
1) CellCept which can lead to a fatal brain infection and also gives you increased risk of lymphoma (and gives me 100% chance of diarrhea)...
2) benlysta which as I understand it allows you to take a reduced amount of prednisone. I'm not on prednisone.
3) plaquenil which mostly helps with skin and joint problems but not kidney problems. And may cause blindness.
4) Prednisone (low dose). Start with high dose to get things under control, then taper to as low a dose as possible, while still keeping disease under control.
I do not like any of these options, to be frank.
I'm stubborn and demanding and I will get my health back. I've had a couple years 95, 96 and 2003 2004 where I really felt great and was medication-free. So I know it's possible. I recently quit my teaching position in Westfield at a guitar store so that I would have more time to devote to my health. Time to dig in. Wish me well! I will keep you updated.
Carla
http://www.thesingingpatient.com
Friday, September 5, 2014
Charity Fashion Show in Greensboro, NC to Benefit Lupus 9/11/14
Live Life Foundation to Host the “Suite Life” Charity Fashion Show in Greensboro to Benefit Lupus
Proceeds will Raise Funds for Lupus Research, Awareness and Education Efforts
Greensboro, N.C.—The Live Life Foundation will host the “Suite Life” charity fashion show on Thursday, Sept. 11, 6 p.m. - 9 p.m. at Revolution Mill Studio, 1200 Revolution Mill Dr.
This charity event will help raise awareness about lupus, an autoimmune disease where the body's immune system becomes hyperactive and attacks normal, healthy tissue. Symptoms include inflammation, swelling, and damage to joints, skin, kidneys, blood, the heart and lungs.
The “Suite Life” is a black tie charity fashion show that will raise funds to benefit the Live Life Foundation and The Lupus Foundation of America: organizations that support lupus research, awareness, and education. In addition to the fashion show, the event will include giveaways, live entertainment and refreshments.
Tickets are $25 and $40 for couples and can be purchased at the door or online at http://www.livelifefoundation.co or
http://www.eventbrite.com/e/live-life-foundation-presents-the-suite-life-charity-fashion-show-tickets-11937837393
Clothing sponsors for this event include Old Navy and Maurice’s.
http://www.eventbrite.com/e/live-life-foundation-presents-the-suite-life-charity-fashion-show-tickets-11937837393
Clothing sponsors for this event include Old Navy and Maurice’s.
The event will be hosted by local spoken word artist, Josephus III.
For additional information about this charity event, please contact Desere' Cross at 704-798-0512.
About The Live Life Foundation:
The Live Life Foundation was created by founder, Tracy Darden in 2012, as a direct response to her being diagnosed with lupus. Live Life strives to uplift, inspire, and encourage those diagnosed with lupus.
For additional information about this charity event, please contact Desere' Cross at 704-798-0512.
About The Live Life Foundation:
The Live Life Foundation was created by founder, Tracy Darden in 2012, as a direct response to her being diagnosed with lupus. Live Life strives to uplift, inspire, and encourage those diagnosed with lupus.
Live Life also provides positive strategies to help people deal with the health issues, mental challenges, and the emotional struggles that lupus sometimes causes. From health clinics to fashion shows, the Live Life Foundation offer tips and techniques to help people living with lupus to look their best on the outside and feel their best on the inside.
Monday, July 28, 2014
Taking Care of Your Corner of the World
A little something from the "good news" department.
This is Ares.
Earlier this month, my friend's dog (Ares) got spooked by some fireworks and broke out of the gate. He was missing for about 2 days. Turns out he was hit by a car, then someone dropped him (severely injured) at the animal shelter.
Once the family was reunited with Ares, they brought him to the emergency vet, who quoted a really high price for the necessary surgery (leg amputation). The family was looking at having to put Ares down (they have 2 boys in college, and thousands of dollars in vet bills was just not something they could manage).
I saw their post about Ares on facebook, and how saddened they were about the prospect of euthanizing their dog. And I thought- this isn't necessary! A number of their friends had already offered to chip in a hundred dollars. So I set up an indiegogo campaign. One of those sites where you have a project (frequently, it's a band wanting to make a new CD), and you set a monetary goal, put your story up on the site, then spread the link around via social media and email and ask people to contribute to your cause.
Meanwhile, friends helped the family find a more affordable vet who would take installment payments.
Then, sure enough, everyone pitched in and raised all the money in just 3 days! All I did was set it up and post it on facebook and twitter, and send emails to some mutual friends. It was a group effort. But with everyone doing just a little (and a few people doing more than a little!), we saved a dog's life.
I learned a long time ago that I can't save the world. But that doesn't mean I should throw up my hands and do nothing. I can take care of my little corner of the world. And if we all take care of our little corner of the world, what a wonderful world it will be. Think globally, act locally. If you can make a difference, do! Believe me, Ares' family definitely are the kind of people who make huge positive differences in their corner of the world.
What we have domesticated, we must be responsible for. We made these animals dependent on us, so we must care for them. And they give far back more in return, if we let them. Pets can be such a comfort, so smart, so funny, so loving- a link to nature and an example of how to live in the moment and relax.
I donate to big groups like ASPCA, but I really feel I make a tangible difference when I bring a bunch of old blankets or a pile of newspapers to the local animal shelter. I also donate to local no-kill shelters, like the Happy Cat Sanctuary and Goathouse refuge, where you know the animals are rescued and loved, and little or no money goes to advertising (fundraising) or administration- and you can visit!
It feels so good to know you made a difference in someone's life. It really is better to give than receive.
We love you Ares! You brought out the better side in all of us.
Carla
www.thesingingpatient.com
Sunday, May 18, 2014
Ask me anything! Live chat 5/20/14 3pm Eastern
Wanna be part of an autoimmune-focused internet chat with me? I'm going to be in the chat room this Tuesday, May 20, 3-4pm Eastern time (USA).
My chat is freestyle- no interviewer asking me questions. That was my choice.
I plan to chat about using humor as a way to gain some control, be happier and be healthier emotionally. BUT... we can talk about anything autoimmune that you like. A number of people are doing "A day in the life," so if you want to know about a day in my life, that's open for discussion. Really anything is, but let's try to stick to things that are somewhat related to humor, healing, or illness topics. Because if you get me started on The Big Bang Theory (The TV show, not the actual theory) or Looney Tunes, we'll eat up the whole hour on either of those.
What do you wanna talk about? Think about it, write it down or send yourself an email so you'll remember, and bring it to the chat room this Tuesday! There is a small fee to attend. If you wait until after the conference, I believe you can view all the content for free (but you can't interact or ask questions, because it'll all be recordings).
Official Blurb:
World Autoimmune Arthritis Day 2014 is here- and is designed in a high tech, virtual convention site specifically so all nonprofits, supporters, and patients around the world, regardless of location or physical capability can join. The live portion, which is 47 hours (or May 20th in every time zone around the world), is filled with interactive chats, forums, and a feature A Day in the Life of an Autoimmune Arthritis Patient series. The Day in the Life helps patients understand how to better manage their disease and invites supporters to "walk in our shoes" for a day in the way of challenges.
The fee to attend the LIVE portion of WAAD14, which provides access for the entire 47 hours, is $5 USD prior to the event and $7 at the door. This event is planned, designed, and run by the International Foundation for Autoimmune Arthritis, a 501c3 charity headquartered in the US. REGISTER HERE: http://tinyurl.com/kslttnc
My chat is freestyle- no interviewer asking me questions. That was my choice.
I plan to chat about using humor as a way to gain some control, be happier and be healthier emotionally. BUT... we can talk about anything autoimmune that you like. A number of people are doing "A day in the life," so if you want to know about a day in my life, that's open for discussion. Really anything is, but let's try to stick to things that are somewhat related to humor, healing, or illness topics. Because if you get me started on The Big Bang Theory (The TV show, not the actual theory) or Looney Tunes, we'll eat up the whole hour on either of those.
What do you wanna talk about? Think about it, write it down or send yourself an email so you'll remember, and bring it to the chat room this Tuesday! There is a small fee to attend. If you wait until after the conference, I believe you can view all the content for free (but you can't interact or ask questions, because it'll all be recordings).
Official Blurb:
World Autoimmune Arthritis Day 2014 is here- and is designed in a high tech, virtual convention site specifically so all nonprofits, supporters, and patients around the world, regardless of location or physical capability can join. The live portion, which is 47 hours (or May 20th in every time zone around the world), is filled with interactive chats, forums, and a feature A Day in the Life of an Autoimmune Arthritis Patient series. The Day in the Life helps patients understand how to better manage their disease and invites supporters to "walk in our shoes" for a day in the way of challenges.
The fee to attend the LIVE portion of WAAD14, which provides access for the entire 47 hours, is $5 USD prior to the event and $7 at the door. This event is planned, designed, and run by the International Foundation for Autoimmune Arthritis, a 501c3 charity headquartered in the US. REGISTER HERE: http://tinyurl.com/kslttnc
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