tag:blogger.com,1999:blog-35283243738287100212024-03-13T14:01:06.999-04:00Lupus, Humor, and WellnessThink Outside the Prescription BottleCarla Ulbrich, The Singing Patienthttp://www.blogger.com/profile/15102866927457990437noreply@blogger.comBlogger325125tag:blogger.com,1999:blog-3528324373828710021.post-69273336043208797102020-05-05T22:23:00.002-04:002020-05-05T22:26:25.675-04:00Staying Positive During Quarantine<div dir="ltr" style="text-align: left;" trbidi="on">Like a lot of people with chronic illness, this quarantine is not my first rodeo.<br />
I've been "grounded" before by severe bouts with chronic illness (systemic lupus, along with lupus nephritis, Sjogren's and Raynaud's).<br />
Twice, it was severe enough to leave me completely bed-ridden for months.<br />
I know a little about How to Quarantine.<br />
<br />
Being cooped up doesn't have to be an endless sea of nothingness and depression.<br />
We still have creativity and humor to keep our spirits up. And both of these traits nurture resilience. I believe that is in part because being creative gives us something to focus on besides everything that's not going well. And it can provide an outlet for emotion and self-expression, and even a sense of control.<br />
<br />
In 2002, I was in the hospital with my kidneys failing, congestive heart failure, pleurisy, neuropathy- the lupus was raging out of control. They put me on 9 drugs and chemo to get it under control and I was getting really depressed from the chronic pain as well as being in the hospital and feeling defeated by lupus (again).<br />
<br />
Then Saralyn, my silliest friend, came to visit me. She treated me just like things were normal, instead of awkwardly standing there not knowing what to say. She jumped from goofy topic to goofy topic until she got me to laugh. About maxi pads. And how annoying they are. It changed everything.<br />
<br />
I stayed up late jotting ideas on scraps of paper, writing a really dumb song about how I hate maxi pads and how I can never find a normal box of pads- just weird ones. I was completely distracted from my pain and from the fact that I was in the hospital with 99 problems. The act of creation was an act of me reclaiming my sense of humor and a sense of control.<br />
<br />
Now, that maxi pad song is not one that I share with the world, but it opened the floodgates. I spent hours every day for the next year, even as I was regaining my strength, writing about all the things that frustrated me (had plenty to pick from!) and I ended up writing an entire CD of humorous songs about surviving chronic illness. That CD went on to be played by a lot of radio stations and reaching a lot of other chronically ill patients. I got to pay it forward with the laughter. I took the gift Saralyn gave me and passed it on to my fellow patients.<br />
<br />
And here we all are together, faced with a global challenge this time.<br />
And I've been writing again. About wearing sweatpants, about trying to use Zoom, about cutting my husband's hair.<br />
<br />
You don't need to be a professional to pick up a pen or create.<br />
I encourage everyone to write, even if it's just for yourself. Or make something. Or find some "dad jokes" and get up and tell them to your family. Express yourself! Sometimes the best way to cheer yourself is to cheer someone else.<br />
<br />
<iframe allow="accelerometer; autoplay; encrypted-media; gyroscope; picture-in-picture" allowfullscreen="" frameborder="0" height="315" src="https://www.youtube.com/embed/Ci38LwIZBZk" width="560"></iframe><br />
<br />
<br />
</div>Carla Ulbrich, The Singing Patienthttp://www.blogger.com/profile/15102866927457990437noreply@blogger.com0tag:blogger.com,1999:blog-3528324373828710021.post-60875748308381022302019-08-26T16:25:00.002-04:002019-08-26T16:25:37.785-04:00How to Make a really cheap air conditioner- beat the heat<div dir="ltr" style="text-align: left;" trbidi="on">
Hey there friends with autoimmune diseases and other maladies that are made worse by exposure to heat! There's no need to just suffer and get worse because you can't afford an air conditioner, or your landlord/ Homeowners' Association won't let you put one in your bedroom window. You can beat the heat!<br />
<br />
I found this article on wikihow. I've seen other similar articles using a cooler with water bottles with the fan put inside (the cooler had to have cutouts. This is a lot simpler).<br />
<br />
Check it out and let me know if you try this!<br />
<br />
<a href="https://www.wikihow.com/Make-an-Easy-Homemade-Air-Conditioner-from-a-Fan-and-Water-Bottles" rel="noopener" style="box-sizing: content-box; color: #20627f; font-family: "Helvetica Neue", Helvetica, Arial, sans-serif; font-size: 13px; line-height: normal; outline: none !important; transition: color 200ms ease-out; word-break: break-word;" target="_blank">https://www.wikihow.com/Make-an-Easy-Homemade-Air-Conditioner-from-a-Fan-and-Water-Bottles</a><span style="background-color: white; font-family: "Helvetica Neue", Helvetica, Arial, sans-serif; font-size: 13px;"> </span></div>
Carla Ulbrich, The Singing Patienthttp://www.blogger.com/profile/15102866927457990437noreply@blogger.com0tag:blogger.com,1999:blog-3528324373828710021.post-36347358756266910902019-07-12T10:58:00.001-04:002019-07-15T22:08:28.703-04:00Great Cure for Poison Ivy, Poison Oak, Poison Sumac<div dir="ltr" style="text-align: left;" trbidi="on">
Poison Ivy!<br />
It's the season.<br />
<br />
I don't know about you, but when I get poison ivy reaction, I get A POISON IVY REACTION!<br />
Last time I had poison ivy, it went systemic. Anywhere I had skin was now a rash, some of it oozing. I was in a ridiculous cycle: itching like mad, take Benadryl, fall asleep, wake up itching, repeat.<br />
<br />
It was in the middle of this antihistamine-induced stupor that I did a phone interview with a reporter about my music and I wound up talking to the guy for like 5 hours and telling him way too much about my personal life. The only thing I remember from the conversation was that 1) I told him way too much info and 2) as we were hanging up, I said "well, I told you way too much. I have to kill you now.:" (That later became a song I wrote, "I Have to Kill You Now").<br />
<br />
I was stubbornly resisting prednisone because, although I knew it would bring me relief, I also know from experience that it causes me insomnia, weight gain and mood swings, and it also doesn't get to the root of the problem; it gets your body to stop reacting to the poison, but it doesn't help you clear the poison.<br />
<br />
Now, please note I am not a doctor and these are just the personal choices I make when weighing pros and cons. YOU CAN DIE FROM AN ALLERGIC REACTION.<br />
<br />
I went to the pharmacy and they took one look at me and told me to go to the emergency room.<br />
I said no, dammit, I am not going on prednisone! There has to be another way.<br />
<br />
So they pointed me to the homeopathic remedies, and I ended up taking Rhus Toxidendron, which is a kind fo "hair of the dog." Very tiny amounts of the toxin somehow help the body to clear it. That's the theory. (This is not the "cure' for poison ivy I am talking about- I'm getting to that!).<br />
<br />
It took me about a month to totally get rid of the rash from the poison ivy.<br />
I had a gig during that time. It was one of those "in the round" shows where there are 3-4 songwriters on the stage, taking turns playing songs. and I looked so awful, no one would sit next to me. In retrospect I probably should've canceled and let them go on without me, but this is me- the same person who 4 years later would have a stroke on the way to a gig then still get up and try to perform.<br />
But that's another topic. The point of my telling you this part of the story is: poison ivy is NOT contagious.<br />
<br />
Poison ivy is spread by the *oils* from the leaves, so if you get that oil on your clothes or garden tools or even your dog or cat, you can *keep getting poison ivy* over and over! Anything that has been in contact with poison ivy must be completely cleaned off. So, poison ivy *can* be spread, but only by contact with the oils. (You know what is highly contagious and just as annoying? Pinkeye! But I digress).<br />
<br />
This brings me to the promising *cure* for poison ivy I recently learned about:<br />
a cleanser that removes the oil from poison ivy/ sumac/ oak away from your clothes, tools, skin, etc.<br />
It's called Tecnu.<br />
<br />
Tec Labs Tecnu Original Poison Oak & Ivy Outdoor Skin Cleanser <a href="https://www.amazon.com/dp/B000A7S3WK/ref=cm_sw_r_tw_dp_U_x_z5jkDbKFGDDZK">https://www.amazon.com/dp/B000A7S3WK/ref=cm_sw_r_tw_dp_U_x_z5jkDbKFGDDZK</a><br />
<br />
You rub it on, wait a few minutes then wash it off, and now the oils are removed. You've gotten to the root of the problem rather than just squashing your body's reaction to it. And as far as I know, no nasty side effects and no constantly falling asleep from antihistamines. No oatmeal baths or steroids. No waiting a month for relief. And hopefully no sitting on a stage with 3 other people with empty chairs on either side of you because you look like one of those "please send money to help this poor afflicted person" commercials.<br />
<br />
Of course, an ounce of prevention is worth a pound of cure, so if you can just avoid poison ivy/ oak/ sumac altogether, that'd be ideal. But 'tis the season for outdoor fun and you can't spend your whole life hiding indoors (well, I guess you can, but even if you do, other people go outside and can bring the poison oils with them on their clothes/ pets/ tools).<br />
<br />
Wishing you an itch-free summer!<br />
Carla<br />
<br />
*P.S. <span style="background-color: #f2f3f5; caret-color: rgb(28, 30, 33); color: #1c1e21; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 13px;">NEVER burn poison ivy; the smoke can carry the poison into your lungs and kill you! (Thanks, Tom Reed for that reminder!)</span></div>
Carla Ulbrich, The Singing Patienthttp://www.blogger.com/profile/15102866927457990437noreply@blogger.com0tag:blogger.com,1999:blog-3528324373828710021.post-47237473746185180542019-01-07T15:13:00.004-05:002019-01-09T15:07:31.158-05:00Book review: Anatomy of an Illness by Norman Cousins<div dir="ltr" style="text-align: left;" trbidi="on">
This may seem a little odd, but I'm reviewing a book that came out in 1979.<br />
And I've read it before, in 1994.<br />
<br />
Why would a I review a book I read 25 years ago, and one that is 40 years old?<br />
Because it's a great book, it's still relevant and my memory is so sketchy that any book I read a second time may as well be new to me. I remembered just enough about the book to know I needed and wanted to read it again.<br />
<br />
A little backstory on how I found this book in the first place, then on to my review.<br />
In 1993, I was diagnosed with lupus (SLE). I had a pretty severe bout with it, involving kidney failure, anemia, exhaustion, joint pain, hair loss, trouble eating/ digesting. At one point, I wasn't sure I was going to live.<br />
<br />
Once I got on the prednisone and realized I was going to survive, I got my fight back, and I wanted my quality of life back. I wanted better choices than strong doses of steroids, with their nasty and serious side effects. Most likely while writing in my morning journal, or when out for a walk, I had a flash of intuition telling me to look into mind-body connection. And so I went to the library and searched under that term (remember, there was no internet in 1994).<br />
<br />
The 2 books I found in my local library were this one, <u>Anatomy of an Illness</u> by Norman Cousins, and <u>Love, Medicine and Miracles</u>, by Bernie Seigel (I intend to reread and review that book here as well). Both great books, both eye-opening and mind-bending, both very much worth reading.<br />
<br />
And now, on to my review.<br />
<br />
<u>Anatomy of an Illness</u> by Norman Cousins<br />
<br />
This book came about as a result of the author's experience with a life-threatening illness.<br />
He was diagnosed with ankylosing spondylitis (<span style="background-color: white; font-family: "arial" , sans-serif; font-size: 14px;">Bechterew's disease) and given a one in 500 chance of survival.</span><br />
<span style="background-color: white; font-family: "arial" , sans-serif; font-size: 14px;"><br /></span>
<span style="background-color: white;"><span style="font-family: "arial" , sans-serif;"><span style="caret-color: rgba(255, 255, 255, 0.701961); font-size: 14px;">These dismal odds set him on the path of being proactive about his health. Being in constant agony, he could not sleep. And if you can't sleep, you can't heal. </span></span></span><br />
<span style="background-color: white;"><span style="font-family: "arial" , sans-serif;"><span style="caret-color: rgba(255, 255, 255, 0.701961); font-size: 14px;"><br /></span></span></span>
<span style="background-color: white;"><span style="font-family: "arial" , sans-serif;"><span style="caret-color: rgba(255, 255, 255, 0.701961); font-size: 14px;">But somehow Cousins realized if he could get a good belly laugh, he could get two hours of actual restful sleep. So, someone wrangled a film projector for him, and some old episodes of Candid Camera (this was 1964 when this happened), and some Marx Brothers films. For this reason, he's seen as a pioneer in the field of humor and health.</span></span></span><span style="background-color: white; font-family: "arial" , sans-serif; font-size: 14px;"><br /></span><br />
<span style="background-color: white;"><span style="font-family: "arial" , sans-serif;"><span style="caret-color: rgba(255, 255, 255, 0.701961); font-size: 14px;"><br /></span></span></span>
<span style="background-color: white;"><span style="font-family: "arial" , sans-serif;"><span style="caret-color: rgba(255, 255, 255, 0.701961); font-size: 14px;">Cousins also, through reading medical journals, realized the importance of Vitamin C in healing collagen (breakdown of collagen being a major part of what was happening in his body). </span></span></span><br />
<span style="background-color: white;"><span style="font-family: "arial" , sans-serif;"><span style="caret-color: rgba(255, 255, 255, 0.701961); font-size: 14px;"><br /></span></span></span>
<span style="background-color: white;"><span style="font-family: "arial" , sans-serif;"><span style="caret-color: rgba(255, 255, 255, 0.701961); font-size: 14px;">He had to advocate for himself to get vitamin C therapy, and to get the film projector and films for his self-prescribed laughter therapy.</span></span></span><br />
<span style="background-color: white;"><span style="font-family: "arial" , sans-serif;"><span style="caret-color: rgba(255, 255, 255, 0.701961); font-size: 14px;"><br /></span></span></span>
<span style="background-color: white;"><span style="font-family: "arial" , sans-serif;"><span style="caret-color: rgba(255, 255, 255, 0.701961); font-size: 14px;">This book, however, is not a memoir. His account of his illness and recovery are a short part of the book, near the beginning. Much of the book is devoted to examples of the power of </span></span></span><span style="font-family: "arial" , sans-serif;"><span style="caret-color: rgba(255, 255, 255, 0.701961); font-size: 14px;">the mind to affect one's health, as well as the amazing things that can be done for "hopeless" conditions if the patient or the doctor is willing to think outside the box and look for the root cause of problems.</span></span><br />
<span style="font-family: "arial" , sans-serif;"><span style="caret-color: rgba(255, 255, 255, 0.701961); font-size: 14px;"><br /></span></span>
<span style="font-family: "arial" , sans-serif;"><span style="caret-color: rgba(255, 255, 255, 0.701961); font-size: 14px;">There are a few places in the book where he uses technical terms, and you may want to have google or dictionary.com handy, but it's only here and there. Mostly the book is very accessible.</span></span><br />
<span style="background-color: white;"><span style="font-family: "arial" , sans-serif;"><span style="caret-color: rgba(255, 255, 255, 0.701961); font-size: 14px;"><br /></span></span></span>
<span style="background-color: white;"><span style="font-family: "arial" , sans-serif;"><span style="caret-color: rgba(255, 255, 255, 0.701961); font-size: 14px;">Anatomy of an Illness is a book about advocating for yourself as a patient, working in partnership with your doctor, and about the power of the mind to affect one's physical well-being.</span></span></span><br />
<span style="background-color: white;"><span style="font-family: "arial" , sans-serif;"><span style="caret-color: rgba(255, 255, 255, 0.701961); font-size: 14px;"><br /></span></span></span>
<span style="background-color: white;"><span style="font-family: "arial" , sans-serif;"><span style="caret-color: rgba(255, 255, 255, 0.701961); font-size: 14px;">While it may seem strange for me to review a bestseller- Norman Cousins doesn't need my help in order to sell books- I found this book so valuable and empowering in my recovery that I wanted to share about it here.</span></span></span><br />
<span style="background-color: white;"><span style="font-family: "arial" , sans-serif;"><span style="caret-color: rgba(255, 255, 255, 0.701961); font-size: 14px;"><br /></span></span></span>
<span style="background-color: white;"><span style="font-family: "arial" , sans-serif;"><span style="caret-color: rgba(255, 255, 255, 0.701961); font-size: 14px;">40 years after publication, this book remains as relevant as the day it first appeared on bookstore shelves.</span></span></span><br />
<span style="background-color: white; font-family: "arial" , sans-serif; font-size: 14px;"><br /></span>
<b>Anatomy of an Illness: As Perceived by the Patient</b> (Twentieth Anniversary Edition) <a href="https://www.amazon.com/dp/0393326845/ref=cm_sw_r_tw_dp_U_x_bk7mCb9K391Y0">https://www.amazon.com/dp/0393326845/ref=cm_sw_r_tw_dp_U_x_bk7mCb9K391Y0</a></div>
Carla Ulbrich, The Singing Patienthttp://www.blogger.com/profile/15102866927457990437noreply@blogger.com0tag:blogger.com,1999:blog-3528324373828710021.post-42289225558551111122017-04-30T23:20:00.002-04:002017-04-30T23:20:19.854-04:00Seeking Female Teen Lupus Patient in Newark, NJ area <div dir="ltr" style="text-align: left;" trbidi="on">
<table border="0" cellpadding="0" cellspacing="0" id="content_LETTER.BLOCK19" style="font-family: Geneva, Arial, Helvetica, sans-serif; width: 100%px;"><tbody>
<tr><td align="left" class="Content MainText" colspan="1" rowspan="1" style="color: #333333; font-family: 'Times New Roman', Times, serif; font-size: 12pt; padding: 8px 20px 9px;" valign="top"><div style="font-family: Geneva, Arial, Helvetica, sans-serif; font-size: 9pt;">
<div style="font-size: 9pt;">
Friday, April 28, 2017 </div>
<div style="font-size: 9pt;">
</div>
</div>
</td></tr>
</tbody></table>
<table border="0" cellpadding="0" cellspacing="0" id="content_LETTER.BLOCK19" style="font-family: Geneva, Arial, Helvetica, sans-serif; width: 100%px;"><tbody>
<tr><td align="left" class="Content MainText" colspan="1" rowspan="1" style="color: #333333; font-family: 'Times New Roman', Times, serif; font-size: 12pt; padding: 8px 20px 9px;" valign="top"><div style="font-family: Geneva, Arial, Helvetica, sans-serif; font-size: 9pt;">
<div style="font-size: 9pt;">
<div style="font-size: 14pt;">
<strong><div align="center" style="font-size: 9pt; text-align: center;">
One Girl with lupus, Custom Designed </div>
<div align="center" style="font-size: 9pt; text-align: center;">
Prom Dress in Newark, NJ area:</div>
</strong><br /></div>
<div style="font-size: 14pt;">
A young and upcoming designer, Christopher, would like to honor his mother and sister, who both battle lupus, by designing a prom dress for one young lady with lupus in the Newark, NJ area. He needs about 3 weeks to take measurements and complete the dress. He also has a makeup designer who would also donate their services to complete the look. The fittings would take place at a store/boutique in Newark. Please RSVP as soon as possible or by the end of next week, May 5, 2017. If you know of someone who would be interested please contact the lupus Lenny at 973.379.3226, or email us at Lenny@lupusnj.org, Topic : Prom Dress.</div>
<div style="font-size: 9pt;">
</div>
</div>
<div style="font-size: 9pt;">
</div>
</div>
</td></tr>
</tbody></table>
<table border="0" cellpadding="0" cellspacing="0" id="content_LETTER.BLOCK20" style="font-family: Geneva, Arial, Helvetica, sans-serif; width: 100%px;"><tbody>
<tr><td align="left" class="Content MainText" colspan="1" rowspan="1" style="color: #333333; font-family: 'Times New Roman', Times, serif; font-size: 12pt; padding: 8px 20px 9px;" valign="top"><div style="font-family: Geneva, Arial, Helvetica, sans-serif; font-size: 9pt;">
Please pass this to anyone who you think might be interested. <br />Thank you,<br /><div align="right" style="font-size: 9pt; text-align: right;">
Lenny Andriuzzi</div>
<div align="right" style="font-size: 9pt; text-align: right;">
President and CEO</div>
<div align="right" style="font-size: 9pt; text-align: right;">
Lupus Foundation of America,</div>
<div align="right" style="font-size: 9pt; text-align: right;">
New Jersey Chapter, Inc.</div>
</div>
</td></tr>
</tbody></table>
</div>
Carla Ulbrich, The Singing Patienthttp://www.blogger.com/profile/15102866927457990437noreply@blogger.com0tag:blogger.com,1999:blog-3528324373828710021.post-62016738361403834912016-01-26T23:44:00.000-05:002016-01-26T23:44:37.563-05:00Flint, MI Water, hope for lead poisoning victims<div dir="ltr" style="text-align: left;" trbidi="on">
Flint, Michigan's lead-tainted municipal water is big news. And it should be.<br />
For over a year, government officials knowingly poisoned the people they suppoedly represent by supplying them with lead-contiminated water.<br />
<br />
According to moveon.org, "General Motors had announced in October 2014—six months after Flint started getting its water from the Flint River—that it would no longer use the water because it was corroding its equipment. Imagine what it was doing to people's bodies."<br />
<br />
That's pretty despicable. Immoral. And, I hope, Illegal.<br />
And I really hope they are rectifying it immediately, by supplying these people with clean water.<br />
<br />
As to the future of these citizens, here's where I disagree with the majority of people writing about this.<br />
<br />
According to activist and filmmaker Michael Moore,<br />
<br />"The children of Flint, already among the poorest in the United States, will now have to endure a life of pain, irreversible brain damage, and lower IQs because of Gov. Snyder's actions and the ensuing cover-up. <br /><br />Justice must be served—and other elected officials must be put on notice that people's lives are more important than balancing a budget."<br />
<br />
I agree with this statement: Justice must be served.<br />
However, I disagree with the notion that lead poisoning is irreversible.<br />
It is not.<br />
<br />
Last century, a number of our military personnel were poisoned with lead when painting battleships (the paint contained lead and they inhaled lead-laden fumes while working).<br />
<br />
In the wake of this, modern medicine discovered/ created "chelation therapy," an IV treatment that, at least in adults, is very safe.<br />
<br />
I personally have had chelation therapy twice. Twice, meaning 15 treatments in 1994, and 20 or so treatments in 2002. In my case, my system was found (through blood and hair samples) to contain lead and nickel the first time, and arsenic and nickel the second time. These heavy metals were removed from my system via chelation therapy. My kidney function went back to 100%, after I was told they would fail within 5 years.<br />
<br />
*Chelation therapy was invented to treat lead poisoning, and it is very effective.*<br />
Children do not have to settle for a lower quality of life because they've been poisoned; this poison can be cleared from their systems.<br />
<br />
(Of course, first they need to stop being poisoned by the water they are drinking, cooking, and bathing in).<br />
<br />
There are cheaper ways to clear heavy metals from the system, and they do not involve long hours sitting in a chair attached to an IV drip. For example: <br />
<br />
<a href="http://articles.mercola.com/sites/articles/archive/2013/01/28/chlorella-for-mercury-poisoning.aspx">chlorella for metal poisoning</a><br />
<br />
I support those activists fighting to get clean water and restitution to these people, but true restitution means getting them their health back. And that can be done.<br />
Look for solutions, always, Do not remain a victim if there is another choice. And in this case there is another choice; lead can be removed from the body.<br />
<br />
I do not sell chlorella or chelation therapy and have zero financial interest in Chlorella or chelation therapy. I just fell it's really important to let people know they do have the power to heal, despite what they may be told.<br />
<br />
And if we are going to fight for these people, let's go all the way and fight for them to get clean water AND get their healthy children back. And the Governor can pay for these treatments. It really is the least he can do.<br />
<br />
Respectfully,<br />
Carla Ulbrich<br />
#gettheleadout<br />
</div>
Carla Ulbrich, The Singing Patienthttp://www.blogger.com/profile/15102866927457990437noreply@blogger.com0tag:blogger.com,1999:blog-3528324373828710021.post-45149386985518590552016-01-14T14:00:00.000-05:002016-01-14T14:00:05.667-05:00See a doctor or therapist without leaving your house!<div dir="ltr" style="text-align: left;" trbidi="on">
Need to see a doctor for something minor (cold, UTI, flu), but you don't want to leave the house? Now you can do that! In fact, you can even do therapy via video conference, without even getting out of your PJs. <br />
<br />
How do I know? <br />
I recently realized I need some solid grief support (my father died December 5 and I spent most of his last week on earth with him, helping him through the process of dying). I definitely need more help than I can get
from friends and Facebook (and I don't really want to talk about my grief process on
facebook. Some troll is bound to turn it into a political argument).<br />
<br />
I googled and clicked for hours, with no results (other than the suicide hotline), looking for a bereavement group. So I decided to go ahead and look for a professional counselor.<br />
<br />
But I just couldn't deal with the idea of setting up an in-person appointment, waiting a month (or longer), driving through godawful New Jersey traffic (in the freezing cold) and sitting in a waiting room with everyone else's germs/ neuroses/ iphones. And then, what if the counselor is a bonehead? I still get charged some huge fee and have to start all over again. What to do?<br />
<br />
I was up late (as usual- my insomnia has returned) and saw a commercial for "Doctor on Demand" app. Apparently everyone else already knows about this, because Dr. Phil started it. I thought, "what a great idea! You can just go online and see a live doctor via video conference right away!" (When I watched the Jetsons as a kid, that idea seemed impossible!). So that led me down a rabbit's trail look at various online apps and websites, and I'll share my mini-reviews of each here.<br />
<br />
<b>Doctor on Demand</b>: It's an app and a website. Best use: contact an MD, anytime, 24/7, for basic issues like common cold, sinus infection, UTI, etc. and they can even write you a prescription. They also have a small batch of psychologists, but not very many, and the psychologists are NOT on demand 24/7. You have to make an appointment.<br />
<br />
My computer is too old to use their website, so i got the app. I set up an appointment with a psychologist but at the time of the appointment, I was never able to connect to her via the app. I spent the entire time on the phone with customer support, troubleshooting, while the psychologist was on the other end twiddling her thumbs (or playing Angry Birds. I don't know. I never got to talk to her). Total fail. So, at the suggestion of tech support, I set up another appointment, with all other apps on my phone closed, on wifi. Again, could not connect, wasting the Dr.'s time and mine. I asked if I could set up a test appointment with tech support to get the app to work, They acted like that was a weird request and as of a week later, they have never got back to me to do so. I wasn't holding my breath. Moving on...<br />
<br />
<u>Bottom line:</u> don't use Doctor on Demand for a psychologist- it's not their strength. And I'm not impressed with their customer support. I hear it's very helpful if you have a non-crisis medical issue, such as a UTI, the flu, a cold. You'll save yourself a trip, a wait, and some money. You can find a coupon code for a free first visit, if you google around for one. The one on the TV commercial was "EASY."<br />
<br />
<b>Talk space</b>: This is specifically psychological help. App where you message back and forth for a weekly fee (unlimited, but you have to wait for a reply- could take hours). Once I realized it was just basically texting, but with long delays, I realized this is not what I wanted or needed at this time. I need a higher level of support right now.<br />
<u>Bottom line</u>: definitely not useful for a crisis. And no video/ faces.<br />
<br />
<b>Betterhelp</b>: website and app. Again, it's just messaging. They do specifically match you with a counselor based on your answers to a questionnaire, so I like that feature. I may go back to this, as they found me someone who's into using creativity as a tool for working through stuff. But having to wait a long time to get a response, and sometimes a very short response, is disappointing, esp. considering the fee. (weekly rate). They do have a free 7-day trial period, so you can try it out. But you have to enter a credit card to do the 7-day trial, so you'll probably have to make sure you cancel before those 7 day are up, if you do not wish to continue.<br />
<br />
<u>Bottom line:</u> This one is a maybe, but not for someone who needs a lot of support.<br />
<br />
<b>Breakthrough</b>: website and app. This one, I like. Like Doctor on Demand, you do a video session via the app (feels like skype or facetime). However, unlike Doctor on Demand, they were very helpful and fast about doing a test appointment with tech support beforehand, and it worked on the first try. They also have a LOT of counselors to choose from. I just had my free 15-minute consult (not all of the counselors offer that) and found someone I like and feel good about.<br />
<br />
<u>Bottom line</u>: Easy to use, lots of professional to choose from, the most like normal counseling, but without the commute. The fees are per hour as opposed to a subscription. Probably covered by insurance.<br />
<br />
It was an aggravating week trying to find help, but i finally did.<br />
Never give up!<br />
<br />
Carla</div>
Carla Ulbrich, The Singing Patienthttp://www.blogger.com/profile/15102866927457990437noreply@blogger.com0tag:blogger.com,1999:blog-3528324373828710021.post-61225342378686617812015-11-28T15:46:00.000-05:002015-11-28T15:46:00.404-05:00Recovering Crapatarian on eating well<div dir="ltr" style="text-align: left;" trbidi="on">
I've mentioned this before. I am a recovering Crapatarian.<br />
I grew up hating food, unless it was junk (salt, sugar, fizz).<br />
<br />
I've been working on breaking the junk food habit, along with the "foods I'm allergic to" habit for my entire adult life.<br />
<br />
I have tried every kind of diet: candida diet, gluten-free, raw foods, calorie counting. Some of them worked, but I never lasted very long on any of them. I have finally found a system that helps me keep my eating clean. And it has had a HUGE impact on my well-being. I didn't want to mention it until I'd actually managed to stick with it. I've been on this plan since last September, and I couldn't be more pleased with it.<br />
<br />
I feel great, and I look great (if I do say so myself!). I'm off the pain meds! I'm on zero immune suppressants. And I am in remission. I've had 3 very serious flares (strokes, kidney failure, congestive heart failure, anemia, pleurisy, extreme weight loss- and then of course the extreme prednisone weight gain!), so I hesitate to say I'm "cured." Because frankly, all I have to do is start eating junk food and foods I'm allergic to and I'll get sick again.<br />
<br />
I wanted to share some pictures of me last year and this year. I've received so many compliments lately that I had to go back and see for myself what I looked like a year ago. Hair, skin, eyes- not to mention 15 pounds lighter - with no exercise! (I did start exercising after I dropped the weight, because I finally had the energy).<br />
<br />
It's possible to kick old habits! It's possible to get better! It's possible to feel great again. I still have a couple things to work out (I take sleep meds and they cause memory problems, and I have ADD- but those are old problems, and I will tackle them next!)... but I feel like I finally have my life back!<br />
Carla<br />
PS If you're interested in the nutrition plan, let me know. E mail me at carlau@comcast.net !<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://2.bp.blogspot.com/-jFO3lAc2sos/VlU7oFmelUI/AAAAAAAAAXI/m1bK2yoLMec/s1600/2014%2Bface.PNG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="http://2.bp.blogspot.com/-jFO3lAc2sos/VlU7oFmelUI/AAAAAAAAAXI/m1bK2yoLMec/s320/2014%2Bface.PNG" width="229" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">summer 2014</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-OmehXJ78Id0/VlU7q6mwUCI/AAAAAAAAAXQ/qCtQhL_-Kf8/s1600/2015%2Bface.PNG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="189" src="http://4.bp.blogspot.com/-OmehXJ78Id0/VlU7q6mwUCI/AAAAAAAAAXQ/qCtQhL_-Kf8/s320/2015%2Bface.PNG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">summer 2015</td><td class="tr-caption" style="text-align: center;"><br /></td><td class="tr-caption" style="text-align: center;"><br /></td><td class="tr-caption" style="text-align: center;"><br /></td><td class="tr-caption" style="text-align: center;"><br /></td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
</tbody></table>
<br />
<br /></div>
Carla Ulbrich, The Singing Patienthttp://www.blogger.com/profile/15102866927457990437noreply@blogger.com0tag:blogger.com,1999:blog-3528324373828710021.post-76399031715725350322015-11-24T23:49:00.001-05:002015-11-24T23:49:23.161-05:00What the Bleep is in this can?<div dir="ltr" style="text-align: left;" trbidi="on">
<div dir="ltr" style="text-align: left;" trbidi="on">
This song was inspired by my attending a conference where the ONLY thing to drink was Diet Cherry Vanilla Dr Pepper. (Dr Pepper already has 23 flavors in the first place!)<br />
<br />
<br /></div>
<iframe allowfullscreen="" frameborder="0" height="315" src="https://www.youtube.com/embed/GwPqSycOBsg" width="560"></iframe></div>
Carla Ulbrich, The Singing Patienthttp://www.blogger.com/profile/15102866927457990437noreply@blogger.com0tag:blogger.com,1999:blog-3528324373828710021.post-48039840106055630622015-10-14T16:53:00.002-04:002015-10-14T16:53:40.560-04:00Selena Gomez "comes out" as a lupus patient<div dir="ltr" style="text-align: left;" trbidi="on">
Lupus is still a fairly misunderstood illness. I still get strange questions about it, years after I was first diagnosed. Of course, I have to remember that when i was diagnosed, i'd never even heard the word "lupus" myself.<br />
<br />
When a celebrity opens up about having an illness, it can potentially help bring more awareness and even more compassion to the illness, and more importantly, better understanding.<br />
<br />
"Coming out" as a celebrity with a chronic illness is risky. There's the fear that people won't want to hire you for shows/ movies anymore because you might cancel the show/ perform poorly because you're sick. Decades ago, when celebrities developed cancer, they were completely hush-hush about it. They would find a doctor who would treat them in a remote place, under complete secrecy, and neither the doctor nor the celebrity would ever speak of it. Show biz is, indeed, a competitive business. No one wanted to jeopardize their career by admitting to not
being in perfect health and able to work at the drop of a hat. <br />
<br />
Speaking of hats, hats off to Selenaa Gomez, for talking openly about her recent diagnosis of lupus.<br />
<a href="http://tinyurl.com/pwwrfv7">http://tinyurl.com/pwwrfv7</a></div>
Carla Ulbrich, The Singing Patienthttp://www.blogger.com/profile/15102866927457990437noreply@blogger.com0tag:blogger.com,1999:blog-3528324373828710021.post-40762812824735680412015-10-06T16:11:00.002-04:002015-10-14T16:54:11.409-04:00Online Lupus Chat Wed. 10/14 with HSS<div dir="ltr" style="text-align: left;" trbidi="on">
The Hospital for Special Surgery is hosting an online lupus chat tomorrow.<br />
The doctors and people there are really knowledgable and friendly.<br />
So, if you have questions you'd like expert answers to, join in!<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://3.bp.blogspot.com/-_HVZPB8nfgs/VhQq5h6OCMI/AAAAAAAAAWg/5cGcFkY0g_A/s1600/image001.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="http://3.bp.blogspot.com/-_HVZPB8nfgs/VhQq5h6OCMI/AAAAAAAAAWg/5cGcFkY0g_A/s320/image001.png" width="320" /></a></div>
<br /></div>
Carla Ulbrich, The Singing Patienthttp://www.blogger.com/profile/15102866927457990437noreply@blogger.com0tag:blogger.com,1999:blog-3528324373828710021.post-27421449591835970822015-10-05T01:56:00.001-04:002015-10-06T21:04:01.243-04:00Having a Life When You Have an Illness<div dir="ltr" style="text-align: left;" trbidi="on">
It's funny, being in "show biz," how most of us who have a chronic illness are secretive about it (I was for years) and are in fact, usually more reliable than artists who don't have an illness.<br />
<br />
Back in 2002, I got up and did a show after I'd just had a stroke. My left hand wasn't working. I just sucked it up, told some stories and jokes and thudded along on the guitar with the few notes I was able to hit. I'm very stubborn...<br />
<br />
For years now, I've been swinging back and forth between the two extremes of being a hypochondriac ("I broke a nail! Oh Lord- it's the lupus!") to being in total denial ("I haven't been able to feel my foot for 3 days. It'll pass. It's just lupus.") I think (I hope) I've finally found a balance, where I am able to live my dreams and keep my health.<br /><br />
Sometimes I have to binge-sleep after several long, tough days of too much work and not enough sleep, but I'm able to stay healthy, off the immune suppressants, and be creative and live a full life.<br />
<br />
The truth is, if I'd never gotten ill, I'd have never had the courage to
leave the unrewarding but "safe" world of retail and pursue my secret
(even to me) dreams of sharing my songs with the world.<br />
<br />
So here's a one of my non-medical funny songs about relationships. Because I don't want my whole life to be about being sick or not being sick. There's more to me- more to all of us- than that.<br />
<br />
<br />
<iframe allowfullscreen="" frameborder="0" height="270" src="https://www.youtube.com/embed/BE3me1EeK3Q" width="480"></iframe></div>
Carla Ulbrich, The Singing Patienthttp://www.blogger.com/profile/15102866927457990437noreply@blogger.com0tag:blogger.com,1999:blog-3528324373828710021.post-78074783827978080382015-07-22T12:54:00.001-04:002015-07-22T14:47:33.036-04:00Survey for SLE patients with lupus nephritis (kidney involvement)<div dir="ltr" style="text-align: left;" trbidi="on">
A small pharmaceutical company from Canada is developing an investigational drug for the treatment of lupus nephritis, and is conducting this study to demonstrate its efficacy and safety when taken orally twice daily when compared to placebo. The study will last about twelve months and consist of about 13 visits to the study clinic during that time.<br />
<br />
Volunteers who participate may or may not benefit from taking the study drug, but will be contributing to research that may well help those suffering from lupus nephritis in the future. Also, they will have more tests and clinic assessments through the study than they would normally have in the course of their treatment, which may allow their own doctors to more thoroughly assess their condition.<br />
<br />
If you’d like to take a look at the study website, it’s located at https://www.yourlupusstudy.com. This page also has the pre-qualification questionnaire that will help volunteers know if the study is a good fit for them.<br />
<br />
As with any research study, your private medical information will be assiduously protected if you choose to participate in the study. </div>
Carla Ulbrich, The Singing Patienthttp://www.blogger.com/profile/15102866927457990437noreply@blogger.com0tag:blogger.com,1999:blog-3528324373828710021.post-2954837568155764492015-07-22T03:40:00.003-04:002015-07-22T03:40:44.665-04:00Survey for SLE patients about communicating with family<div dir="ltr" style="text-align: left;" trbidi="on">
<div class="article-content">
<h1 class="article-title" itemprop="headline">
Request for Assistance with SLE Research</h1>
<div class="article-meta">
<div class="pub-date" datetime="2015-06-04T16:03:26.000Z" itemprop="datePublished">
Jun 4, 2015</div>
<div class="pub-date" datetime="2015-06-04T16:03:26.000Z" itemprop="datePublished">
</div>
<div class="pub-date" datetime="2015-06-04T16:03:26.000Z" itemprop="datePublished">
Hello! I am a doctoral student in the Department of Communication
Studies at the University of Nebraska-Lincoln. My research centers on
health communication processes. I am conducting my dissertation research
that I hope will improve our understanding of communication in family
contexts for women with systemic lupus erythematosus (SLE). As someone
who has SLE, I am interested in research that is aimed at better
understanding the way that families communicate about SLE and what the
implications are for this communication. Ultimately, I’d like this
research to lead to a better understanding of how communication in our
families can help us orient toward the disease and treatment of the
disease in positive, constructive ways.
</div>
</div>
<div class="article-body" dir="ltr" itemprop="articleBody">
<br />To participate: Participants in the states of Nebraska and
Alabama must be at least 19 years old or older to participate,
participants in the state of Mississippi must be at least 21 years old
to participate, and <strong>participants in all other states must be at least 18 years old to participate</strong>.
If you meet these requirements, have been diagnosed by a medical
physician with SLE lupus at least one year ago, and have 15-30 minutes
to complete an online survey, you can be a part of this exciting
research! <br /><br />To access the survey and participate in the research, simply click on this link: <a href="https://ssp.qualtrics.com/SE/?SID=SV_dgaALt3TLhSfTil" rel="nofollow" target="_blank">https://ssp.qualtrics.com/SE/?SID=SV_dgaALt3TLhSfTil.</a>
I would really appreciate your time. When the study is concluded, I
would be happy to share the results with you. Thank you for considering
being a part of this important research!<br /><br /><br /><br />Kathy Castle<br /><br /> Katherine M. Castle Dr. Jody Koenig Kellas<br />Phone: (402) 472-5658 Phone: (402) 472-2079<br />Email: kcastle4@unl.edu Email: jkellas2@unl.edu<br />
</div>
</div>
</div>
Carla Ulbrich, The Singing Patienthttp://www.blogger.com/profile/15102866927457990437noreply@blogger.com0tag:blogger.com,1999:blog-3528324373828710021.post-11318854186983542832015-02-11T21:26:00.002-05:002015-02-11T21:28:47.984-05:00Positive Addiction<div dir="ltr" style="text-align: left;" trbidi="on">
I don't know exactly how to say how happy I am when I'm completely
engrossed in music, whether it's writing, recording, rehearsing,
performing, editing, attending a great concert. A day spent doing what
you love is a day well-spent. And "a day well-spent brings happy sleep."
-Leonardo DaVinci<br />
<br />
I've played music from the time I found the pots and pans. I got a
xylophone for my first birthday (thank you, Uncle Rod!). I had
recorders, a drum, an accordion, a JCPennrey guitar, all before first
grade. I've always been drawn to music.<br />
<br />
Once I started taking guitar lessons (had to wait til I was 8), I was
very committed to practicing. I walked to my lessons, rain or shine, and
practiced every day, I started school band as soon as I was old enough,
and changed instruments every year, because I practiced so much I got
bored.<br />
<br />
When my parents bought a piano (I think they got it for my little
sister), I added in piano lessons (my guitar teacher only taught
beginners, so those lessons were over). At one point, I was juggling
practicing 5 instruments (tuba, clarinet, flute, piano, guitar). It
wasn't stressful, because I loved practicing. I rigged my
double-cassette deck to make quartet recordings with myself. I lost all
track of time.<br />
<br />
I'd be playing the flute for hours, and my Dad would come downstairs at <span class="aBn" data-term="goog_1817567943" tabindex="0"><span class="aQJ">2am</span></span>: "what the <bleep> is wrong with you! it's <span class="aBn" data-term="goog_1817567944" tabindex="0"><span class="aQJ">2am</span></span>! people are trying to sleep!" Oh.<br />
<br />
But at some point he mentioned that he had read a book about "positive
addiction," and he thought that was what music was for me.<br />
<br />
Maybe. There are a number of ways to describe the phenomenon of someone
being completely wrapped up in what they're doing: a passion, being in
the zone, positive addiction, mental illness...?<br />
<br />
Being happy is an important part of being healthy. After all, health is
not just about physical health. According to the WHO (World Health
Organization),"Health is a state of complete physical, mental and social
well-being and not merely the absence of disease or infirmity." (Even
the government has a holistic view of health!)<br />
<br />
What do you love to do that makes you lose all track of time?<br />
Are you making enough time in your life for it?</bleep><br />
<br />
<div style="font-family: Helvetica; font-size: 12px; margin: 0px;">
<span style="font-size: 12pt;"><span class="userContent" data-ft="{"tn":"K"}"><span class="text_exposed_show"><span class="userContent" data-ft="{"tn":"K"}"><span class="text_exposed_show"><span class="userContent" data-ft="{"tn":"K"}"><span class="text_exposed_show">Carla</span></span><br />
<span class="userContent" data-ft="{"tn":"K"}"><span class="text_exposed_show">The Singing Patient </span></span><br />
<a href="http://thesingingpatient.com/"><span class="userContent" data-ft="{"tn":"K"}"><span class="text_exposed_show">http://thesingingpatient.com/ </span></span></a></span></span></span></span> </span></div>
</div>
Carla Ulbrich, The Singing Patienthttp://www.blogger.com/profile/15102866927457990437noreply@blogger.com0tag:blogger.com,1999:blog-3528324373828710021.post-76179240675715511342015-02-04T20:50:00.005-05:002015-02-04T20:50:58.471-05:00The Hero's Journey<div dir="ltr" style="text-align: left;" trbidi="on">
<div style="font-family: Helvetica; font-size: 12px; margin: 0px; min-height: 13.8px;">
<span style="font-size: 12pt;"></span><br /></div>
<div style="font-family: Helvetica; font-size: 12px; margin: 0px;">
<span style="font-size: 12pt;">Last night, we went to see "the imitation game."</span></div>
<div style="font-family: Helvetica; font-size: 12px; margin: 0px; min-height: 13.8px;">
<span style="font-size: 12pt;"></span><br /></div>
<div style="font-family: Helvetica; font-size: 12px; margin: 0px;">
<span style="font-size: 12pt;">Loved
it. It's my favorite kind of movie: true story, insurmountable task,
complicated main character. The hero's journey. Very well done. </span></div>
<div style="font-family: Helvetica; font-size: 12px; margin: 0px; min-height: 13.8px;">
<span style="font-size: 12pt;"></span><br /></div>
<div style="font-family: Helvetica; font-size: 12px; margin: 0px;">
<span style="font-size: 12pt;">I
never get tired of reading or watching "hero's journey" stories. The
triumph of the human spirit. The same thing that rivets me to the
Olympic Games. Doing the impossible. (if you are unfamiliar with the
term "hero's journey," here are some other examples: Rocky, Star Wars,
karate kid, Shawshank redemption, Lorenzo's oil). (please feel free to
add a comment mentioning a hero's journey story that is a favorite of
yours).</span></div>
<div style="font-family: Helvetica; font-size: 12px; margin: 0px; min-height: 13.8px;">
<span style="font-size: 12pt;"></span><br /></div>
<div style="font-family: Helvetica; font-size: 12px; margin: 0px;">
<span style="font-size: 12pt;">For
22 years now, I've been attempting the impossible – to completely
overcome a nasty autoimmune disease. A "chronic, incurable" illness. Of
course, like running a four-minute mile, a thing will remain impossible
until someone does it. Then, it either inspires others to do the same,
or that person is written off as an idiot, a lunatic, a charlatan, a
heretic, a liar...</span></div>
<div style="font-family: Helvetica; font-size: 12px; margin: 0px; min-height: 13.8px;">
<span style="font-size: 12pt;"></span><br /></div>
<div style="font-family: Helvetica; font-size: 12px; margin: 0px;">
<span style="font-size: 12pt;">What
often happens with people who are able to overcome "incurable" diseases
is they are dismissed by "authorities" with a remark along the lines
of, "well they must've never had that disease in the first place. They
must've been misdiagnosed."</span></div>
<div style="font-family: Helvetica; font-size: 12px; margin: 0px; min-height: 13.8px;">
<span style="font-size: 12pt;"></span><br /></div>
<div style="font-family: Helvetica; font-size: 12px; margin: 0px;">
<span style="font-size: 12pt;">In
my 22 years of attempting the impossible, I haven't completely
accomplished my goal, but I've had periods of really good health,
getting free of all prescription medications. Already, that was
"impossible," according to my doctors. </span></div>
<div style="font-family: Helvetica; font-size: 12px; margin: 0px; min-height: 13.8px;">
<span style="font-size: 12pt;"></span><br /></div>
<div style="font-family: Helvetica; font-size: 12px; margin: 0px;">
<span style="font-size: 12pt;">I'm
proud of this- and pleased to have basically done the equivalent of
getting about halfway up Mount Everest - but I still don't have quite
the quality of life that I want. And I will never give up until I do.</span></div>
<div style="font-family: Helvetica; font-size: 12px; margin: 0px; min-height: 13.8px;">
<span style="font-size: 12pt;"></span><br /></div>
<div style="font-family: Helvetica; font-size: 12px; margin: 0px;">
<span style="font-size: 12pt;">In fact I wear a necklace (which I never take off) that says "never never never give up."</span></div>
<div style="font-family: Helvetica; font-size: 12px; margin: 0px; min-height: 13.8px;">
<span style="font-size: 12pt;"></span><br /></div>
<div style="font-family: Helvetica; font-size: 12px; margin: 0px;">
<span style="font-size: 12pt;">I
continue my quest for optimal health, and I no longer care what anyone
thinks about my tactics. I don't believe that anything is impossible. In
fact I take the word "impossible" as a challenge, like a glove to the
face challenging me to a duel. </span></div>
<div style="font-family: Helvetica; font-size: 12px; margin: 0px; min-height: 13.8px;">
<span style="font-size: 12pt;"></span><br /></div>
<div style="font-family: Helvetica; font-size: 12px; margin: 0px;">
<span style="font-size: 12pt;">This
is my approach, and I do not expect everyone else to take the same
approach. There's nothing wrong with learning ways to cope with an
illness as opposed to fighting it. I choose to fight. By fight, I do not
mean deny or "white knuckle" and suffer- I mean I actively look for
solutions. </span></div>
<div style="font-family: Helvetica; font-size: 12px; margin: 0px; min-height: 13.8px;">
<span style="font-size: 12pt;"></span><br /></div>
<div style="font-family: Helvetica; font-size: 12px; margin: 0px;">
<span style="font-size: 12pt;">I
was recently blocked from a lupus Facebook group. I can only think that
it was because I was posting a bout alternative medicine and other
solutions to lupus. I certainly didn't post anything offensive or attack
anyone.</span></div>
<div style="font-family: Helvetica; font-size: 12px; margin: 0px; min-height: 13.8px;">
<span style="font-size: 12pt;"></span><br /></div>
<div style="font-family: Helvetica; font-size: 12px; margin: 0px;">
<span style="font-size: 12pt;">I
am completely okay with having been kicked out of that group. It was a
lot like the in person support groups from 20 years ago. Very
problem-focused.</span></div>
<div style="font-family: Helvetica; font-size: 12px; margin: 0px; min-height: 13.8px;">
<span style="font-size: 12pt;"></span><br /></div>
<div style="font-family: Helvetica; font-size: 12px; margin: 0px;">
<span style="font-size: 12pt;">I
joined forces with another person who was kicked out of that group for
the same reasons, and we started a new page: cure for lupus. Typically,
any page that mentions a "cure" for an illness is focused on raising
money so that big Pharma can invent some kind of miracle drug for us. </span></div>
<div style="font-family: Helvetica; font-size: 12px; margin: 0px; min-height: 13.8px;">
<span style="font-size: 12pt;"></span><br /></div>
<div style="font-family: Helvetica; font-size: 12px; margin: 0px;">
<span style="font-size: 12pt;">We
are not waiting on a miracle drug. I don't believe there will ever be
one for lupus. Our "cures" are natural and are about diet and
alternative medicine- or anything that will restore balance and harmony
in the body.</span></div>
<div style="font-family: Helvetica; font-size: 12px; margin: 0px; min-height: 13.8px;">
<span style="font-size: 12pt;"></span><br /></div>
<div style="font-family: Helvetica; font-size: 12px; margin: 0px;">
<span style="font-size: 12pt;">I'm just happy that after 22 years, I have found a fellow traveler with whom to climb "Mount Everest."</span></div>
<div style="font-family: Helvetica; font-size: 12px; margin: 0px;">
<br /></div>
<div style="font-family: Helvetica; font-size: 12px; margin: 0px;">
<span style="font-size: 12pt;"><span class="userContent" data-ft="{"tn":"K"}"><span class="text_exposed_show"><span class="userContent" data-ft="{"tn":"K"}"><span class="text_exposed_show"><span class="userContent" data-ft="{"tn":"K"}"><span class="text_exposed_show">Carla</span></span><br />
<span class="userContent" data-ft="{"tn":"K"}"><span class="text_exposed_show">The Singing Patient </span></span><br />
<a href="http://thesingingpatient.com/"><span class="userContent" data-ft="{"tn":"K"}"><span class="text_exposed_show">http://thesingingpatient.com/ </span></span></a></span></span></span></span> </span></div>
</div>
Carla Ulbrich, The Singing Patienthttp://www.blogger.com/profile/15102866927457990437noreply@blogger.com0tag:blogger.com,1999:blog-3528324373828710021.post-22116839546781029752014-12-14T15:35:00.002-05:002014-12-14T15:35:36.588-05:00I think my gums are infected<div dir="ltr" style="text-align: left;" trbidi="on">
Day 80: <br /> Staying up too late again this week. Sleeping super late post-surgery threw off schedule. <br />
Got up, taught a couple lessons then went to a music party where I was
regaled with a new and improved version of my parody of "little brown
jug"-hilarious! Several new verses.<br />
<br />
<div class="text_exposed_show">
Then halfway through the party my mouth really started hurting. Tried
1/2 Percocet- not enough. So had the other half. And weirdly I got
sleepy. Usually Percocet revs me up.<br />
<br />
Put a call in to the
dentist. Will see what he wants to do and when... Meanwhile I'm
literally sucking on an onion hoping it'll kill some cooties.<br />
<br />
So for all you kids in elementary school yes my face hurts and I'm already sucking an onion. No room for a rotten egg.<br />
<br />
Going to bed! This too shall get resolved. I've survived much worse.<br />
<br />
<span class="userContent" data-ft="{"tn":"K"}"><span class="text_exposed_show"><span class="userContent" data-ft="{"tn":"K"}"><span class="text_exposed_show"><span class="userContent" data-ft="{"tn":"K"}"><span class="text_exposed_show">Carla</span></span><br />
<span class="userContent" data-ft="{"tn":"K"}"><span class="text_exposed_show">The Singing Patient </span></span><br />
<a href="http://thesingingpatient.com/"><span class="userContent" data-ft="{"tn":"K"}"><span class="text_exposed_show">http://thesingingpatient.com/ </span></span></a></span></span></span></span> </div>
</div>
Carla Ulbrich, The Singing Patienthttp://www.blogger.com/profile/15102866927457990437noreply@blogger.com0tag:blogger.com,1999:blog-3528324373828710021.post-46757762672069076542014-12-12T15:33:00.000-05:002014-12-14T15:34:13.402-05:00Still as twisted as I was in 8th grade<div dir="ltr" style="text-align: left;" trbidi="on">
Day 79:<br /> I think I can sum up my day (today) on the plan in one sentence:<br /> When it hurts to chew, it's easy to not overeat.<br />
<br />
At least I have superfood shakes and high-quality vitamins. Wouldn't it
be ironic if I got my teeth fixed only to have them fall out from
malnutrition? Don't worry- ain't gonna happen. My twisted sense of will
remain twisted, twisted though. After all the challenges over the years,
I'm still as twisted as I was in 8th grade.<br />
<br />
<div class="text_exposed_show">
Meanwhile I actually look forward to being able to sneeze and spit.
Neither are allowed, lest I blow out my stitches. So... That'll be my
celebration when the dentist gives me the go-ahead: slurping, spitting,
sneezing! Where's a nice restaurant Joe and I can go to for this?<br />
<br />
<span class="userContent" data-ft="{"tn":"K"}"><span class="text_exposed_show"><span class="userContent" data-ft="{"tn":"K"}"><span class="text_exposed_show"><span class="userContent" data-ft="{"tn":"K"}"><span class="text_exposed_show">Carla</span></span><br />
<span class="userContent" data-ft="{"tn":"K"}"><span class="text_exposed_show">The Singing Patient </span></span><br />
<a href="http://thesingingpatient.com/"><span class="userContent" data-ft="{"tn":"K"}"><span class="text_exposed_show">http://thesingingpatient.com/ </span></span></a></span></span></span></span> </div>
</div>
Carla Ulbrich, The Singing Patienthttp://www.blogger.com/profile/15102866927457990437noreply@blogger.com0tag:blogger.com,1999:blog-3528324373828710021.post-91736350642687963312014-12-11T15:32:00.000-05:002014-12-14T15:32:18.605-05:00Day 78: 3 pounds slimmer!<div dir="ltr" style="text-align: left;" trbidi="on">
Day 78:<br />
<br /> Yeehaw! <br /> 3 pounds slimmer! <br /> Total so far: 9.5 slimmer. <br /> 6 lbs to goal weight!<br />
<div class="text_exposed_show">
Of course the real goal is HEALTH!<br />
<br />
I've been skinny, I've been fat, and I've been healthy and skinny, sick
and skinny, sick and fat, getting by and fat (my definition of fat = 25
pounds over my ideal weight. Which I think does put me in the "mildly
obese" category. but let's forget numbers for now...).<br />
<br />
My purpose,
which must not be forgotten (most especially by me), in starting this
new phase of my Health Quest, was to get truly healthy. To be free of
chronic pain, to have energy and to be able to focus mentally on work
and go do fun things socially.<br />
<br />
My mouth is healing (it was really
itchy last night), It's still kinda of unpleasant to eat. But eat I
must. I have a light teaching/ gigging schedule this week, which allows
me to pace myself so I can heal properly this time. I really don't want
to have anyone cut these gums open a 3rd time.<br />
Slept in the bed in a "pile" with Joe and Easy last night (and my blackout curtains and white noise machine). LUXURY!<br />
<br />
Following up with dentist on Tuesday. Hoping for a good report. Then I
guess we'll talk about when we're going to work on the right side of my
mouth. Oy... I CAN DO THIS! <br />
<br /> (But first, a breather...)<br />
Cheers my lovelies-<br />
<br />
<span class="userContent" data-ft="{"tn":"K"}"><span class="text_exposed_show"><span class="userContent" data-ft="{"tn":"K"}"><span class="text_exposed_show"><span class="userContent" data-ft="{"tn":"K"}"><span class="text_exposed_show">Carla</span></span><br />
<span class="userContent" data-ft="{"tn":"K"}"><span class="text_exposed_show">The Singing Patient </span></span><br />
<a href="http://thesingingpatient.com/"><span class="userContent" data-ft="{"tn":"K"}"><span class="text_exposed_show">http://thesingingpatient.com/ </span></span></a></span></span></span></span> </div>
</div>
Carla Ulbrich, The Singing Patienthttp://www.blogger.com/profile/15102866927457990437noreply@blogger.com0tag:blogger.com,1999:blog-3528324373828710021.post-52183937975161703392014-12-10T15:29:00.000-05:002014-12-14T15:29:56.252-05:00Bored therefore braver!<div dir="ltr" style="text-align: left;" trbidi="on">
Day 77: <br />
<br /> My face hurts. (I know, it hurts you to look at it. Yuk
yuk). Since eating is an unpleasant task, I decided to make this a
cleanse day (a day involving very little food).<br />
<br />
I aimed low today and missed (still didn't finish my to-do list for the day). But I'm up and around. <br />
<div class="text_exposed_show">
Even took the dog for a walk. Well, She saw the snow and decided we
weren't going for a walk, but still- it counts. I got her and myself
dressed and out the door.<br />
<br />
She's only 6-7 pounds and this is our first snow this season. As winter
persists, she'll get bored and therefore braver. That's my MO: bored
therefore braver! Well one of my MOs.<br />
<br />
Stuck to the plan. Might
graduate to the bed tonight. Was awfully noisy down here this morning-
leafblowers (during snow flurries- odd), doorbell numerous times. And I
miss my blackout curtains and white noise machine. Think I'm past danger
of hemmorhage.<br />
<br />
Have song idea. Need to finish and make vlog!<br />
<br />
<span class="userContent" data-ft="{"tn":"K"}"><span class="text_exposed_show"><span class="userContent" data-ft="{"tn":"K"}"><span class="text_exposed_show"><span class="userContent" data-ft="{"tn":"K"}"><span class="text_exposed_show">Carla</span></span><br />
<span class="userContent" data-ft="{"tn":"K"}"><span class="text_exposed_show">The Singing Patient </span></span><br />
<a href="http://thesingingpatient.com/"><span class="userContent" data-ft="{"tn":"K"}"><span class="text_exposed_show">http://thesingingpatient.com/ </span></span></a></span></span></span></span> </div>
</div>
Carla Ulbrich, The Singing Patienthttp://www.blogger.com/profile/15102866927457990437noreply@blogger.com0tag:blogger.com,1999:blog-3528324373828710021.post-28863882238964965282014-12-09T15:27:00.000-05:002014-12-14T15:28:11.056-05:00Day 76: My quest to get well<div dir="ltr" style="text-align: left;" trbidi="on">
Day 76: day 75 post is up- I just didn't type "day 75" at the beginning.<br />
<br />
Day 76 of what? Well 2 things. My quest to get well- really well. Time
for the next phase in my 21-year journey in reclaiming every last shred
of my health and leaving no stone unturned. And day 76 of the
nutritional cleanse program I started on sept. 24.<br />
<br />
Sept 23, my
rhuematologist (after 21 years I'm still not sure how to spell that!)
got my labs back and wrote me a prescription for oral chemo. I've bee<span class="text_exposed_show">n
on it before. It's expensive, it gives me diarrhea and body odor, and
increases risk of lymphoma, leukemia, and a fatal brain infection. <br /> What's not to love?</span><br />
<br />
<div class="text_exposed_show">
And this is a "maintenance" drug- meaning the plan is usually to get
and stay on it. (My eulogy: "how sad she died of a brain infection. We
will all remember her for her songs, her humor, but most of all her BO
and frequent bathroom trips").<br />
<br />
All along I've believed that my
illness was caused by something. Not sin, or genetics or bad luck (but
thanks for those theories, well-meaning friends!), but plain old cause
and effect. And so I think back to when things changed.<br />
<br />
Certainly the year before I got sick was very stressful. But in my heart
I know things changed several years before that, after my wisdom tooth
extraction. I've always known that. I just finally found someone who
could fix it!<br />
<br />
I'm only halfway through the process (opened up
then filled the 2 left cavitations), and it was no walk in the park. And
yes my mouth hurts right now. But I've had much worse.<br />
<br />
I look
forward to filling the other 2 craters in my jaw, making it whole again.
And having that be a big part of making me whole again.<br />
<br />
I don't
think I would be dealing with the aftermath as well if I hadn't spent
the last 73 days eating super clean food. It's all a big puzzle. Hoping
these are the last couple pieces.<br />
<br />
I slept on the sofa last night
and will again tonight, propped up to prevent hemorrhaging. Geez
medical words are hard to spell! Enema! Ok not that one. Anyway I slept
12 hours (barely slept night before surgery - much anxiety) and today I
got to eat.<br />
<br />
And now for some mindless tv.<br />
<br />
<span class="userContent" data-ft="{"tn":"K"}"><span class="text_exposed_show"><span class="userContent" data-ft="{"tn":"K"}"><span class="text_exposed_show"><span class="userContent" data-ft="{"tn":"K"}"><span class="text_exposed_show">Carla</span></span><br />
<span class="userContent" data-ft="{"tn":"K"}"><span class="text_exposed_show">The Singing Patient </span></span><br />
<a href="http://thesingingpatient.com/"><span class="userContent" data-ft="{"tn":"K"}"><span class="text_exposed_show">http://thesingingpatient.com/ </span></span></a></span></span></span></span> </div>
</div>
Carla Ulbrich, The Singing Patienthttp://www.blogger.com/profile/15102866927457990437noreply@blogger.com0tag:blogger.com,1999:blog-3528324373828710021.post-40271402242852750692014-12-08T15:24:00.000-05:002014-12-14T15:25:03.887-05:00Dental surgery results<div dir="ltr" style="text-align: left;" trbidi="on">
I have stitches in my gums after more than 2 hours in the dentist's
chair. Rooting around where my wisdom teeth were extracted long ago.<br />
<br />
I have long felt that was the day, at age 19, when my health started going downhill. I was in bed for a month.<br />
<br />
I had previously gone on long bike rides, marched with a tuba and done
back-to-back aerobics records. Sometimes all in 1day. After the wisdom
tooth extraction (all 4), When I exerted myself too much, I felt
"green," like I was hun<span class="text_exposed_show">gover (I wasn't) and needed to barf.</span><br />
<br />
<div class="text_exposed_show">
<div style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;">
<br /></div>
Dr cut open 2 of the sites today and found sclerotic bone (essentially
dead bone) and big holes in my jawbone where it didn't heal
post-surgery. When he saw those holes, and how huge they were, he said
"see? You're not crazy!" I've never had a health professional say that
to me before...<br />
<br />
I've essentially had a slow-drip bacteria feed from the inside of my gums into my sinuses and beyond all this time.<br />
<br />
As I lay there trying not to be fully present, I thought back on the
time after the original surgery and connected the dots. Why I now think
my body didn't heal from the 1st surgery: the dentist told me with great
emphasis that I absolutely must finish my course of antibiotics so I
wouldn't get infections. I had an allergic reaction to the antibiotics
(head-to-toe burning rash), but I kept taking them, for fear of
infection. So I stayed in state of severe allergic reaction for 2 weeks.
Pretty sure that left my body no resources with which to heal my
jawbone.<br />
<br />
How ironic. By suffering through severe allergy in order to avoid infection I ended up with... A long-term infection.<br />
<br />
I still have to get the 2 sites on my right side done. And I will. But
I'm not scheduling it right this second... I barely slept at all last
night, dreading this day. That's how convinced I an that the wisdom
tooth extraction was the beginning of my serious health problems.<br />
<br />
So convinced I will subject myself to something I fear dread and loathe
(dental surgery!), and pay for it out of pocket! (Procedure is neither
mainstream nor covered by insurance).<br />
<br />
Had breakfast and a snack
before surgery, but No more food til tomorrow. Can't risk opening up
surgery sites. I'm not screwing this up twice!!!<br />
<br />
When I got home
our dog came up to me on the sofa and sniffed my mouth - no kisses, just
sniffing. Then curled up on my feet to comfort me. She's so smart. She
and joe watching over me in the "recovery room" (our living room).<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://scontent-a-lga.xx.fbcdn.net/hphotos-xfa1/v/t1.0-9/s720x720/10407864_678566562262416_400579270136087227_n.jpg?oh=bfe7bc495ae48a8e8bfa812c60fbb4b0&oe=55107DDD" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img alt="" border="0" class="fbPhotoImage img" height="320" id="fbPhotoImage" src="https://scontent-a-lga.xx.fbcdn.net/hphotos-xfa1/v/t1.0-9/s720x720/10407864_678566562262416_400579270136087227_n.jpg?oh=bfe7bc495ae48a8e8bfa812c60fbb4b0&oe=55107DDD" width="289" /> </a></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
<span class="userContent" data-ft="{"tn":"K"}"><span class="text_exposed_show"><span class="userContent" data-ft="{"tn":"K"}"><span class="text_exposed_show"><span class="userContent" data-ft="{"tn":"K"}"><span class="text_exposed_show">Carla</span></span><br />
<span class="userContent" data-ft="{"tn":"K"}"><span class="text_exposed_show">The Singing Patient </span></span><br />
<a href="http://thesingingpatient.com/"><span class="userContent" data-ft="{"tn":"K"}"><span class="text_exposed_show">http://thesingingpatient.com/ </span></span></a></span></span></span></span> </div>
</div>
</div>
Carla Ulbrich, The Singing Patienthttp://www.blogger.com/profile/15102866927457990437noreply@blogger.com0tag:blogger.com,1999:blog-3528324373828710021.post-34921860098813485772014-12-08T15:19:00.000-05:002014-12-14T15:19:46.194-05:00She-hulk!<div dir="ltr" style="text-align: left;" trbidi="on">
Days 73, 74: ran out of stevia-sweetened dark chocolate. Oh, the cravings!<br />
<br />
Visited friends in the Bronx Saturday. Got delicious takeout
gluten-free (no cheese) pizza. Our friend suggested twice that we all go
out for frozen yogurt. I changed the topic... And dodged the social
dessert trap!<br />
<br />
And we ended up having a great time playing with
the kids (5-yr old twin boys- they did my hair!), then (after bedtime),
the 2 guys doing Kung fu and 2 gals talking about teaching.<br />
<br />
<div class="text_exposed_show">
Sunday was a day at home so no major challenges, except my lack of
chocolate on hand and my rising anxiety about my oral surgery Monday
afternoon... It'll all be over in 14-15 hours.<br />
Oh and started
exercise Saturday. Just strength training. That usually goes well with
me- I put on muscle pretty easily. She-hulk! Paint me green.<br />
<br />
<span class="userContent" data-ft="{"tn":"K"}"><span class="text_exposed_show"><span class="userContent" data-ft="{"tn":"K"}"><span class="text_exposed_show"><span class="userContent" data-ft="{"tn":"K"}"><span class="text_exposed_show">Carla</span></span><br />
<span class="userContent" data-ft="{"tn":"K"}"><span class="text_exposed_show">The Singing Patient </span></span><br />
<a href="http://thesingingpatient.com/"><span class="userContent" data-ft="{"tn":"K"}"><span class="text_exposed_show">http://thesingingpatient.com/ </span></span></a></span></span></span></span> </div>
</div>
Carla Ulbrich, The Singing Patienthttp://www.blogger.com/profile/15102866927457990437noreply@blogger.com0tag:blogger.com,1999:blog-3528324373828710021.post-72200724967940174032014-12-06T15:17:00.000-05:002014-12-14T15:17:57.305-05:00Emotional eating<div dir="ltr" style="text-align: left;" trbidi="on">
Day 72: got upset about something. Didn't have anyone to talk to, too gross out for a walk... So I overate.<br />
<br /> Emotional eating. Haven't done that in a long time.<br />
<br />
Small consolation- everything I indulged in was healthy. Plant-based
protein shakes, clean protein bars (non gmo, no soy etc). I just had
more than I should've. I wanted a big bag of chocolate!!!<br />
<br />
<div class="text_exposed_show">
In the future I need to have some strategies lined up- a list of
friends to call (no one person is always available), and some kind of
indoor way to blow off steam since it's gonna be gross outside the
majority of the time for the next 4-5 months.<br />
<br />
I'm not toxic- I
didn't eat sugar or foods I'm allergic to. So... There's that anyway.
And today, after my double portions of high-fiber plant protein, I
almost clogged the toilet!<br />
<br />
<span class="userContent" data-ft="{"tn":"K"}"><span class="text_exposed_show"><span class="userContent" data-ft="{"tn":"K"}"><span class="text_exposed_show"><span class="userContent" data-ft="{"tn":"K"}"><span class="text_exposed_show">Carla</span></span><br />
<span class="userContent" data-ft="{"tn":"K"}"><span class="text_exposed_show">The Singing Patient </span></span><br />
<a href="http://thesingingpatient.com/"><span class="userContent" data-ft="{"tn":"K"}"><span class="text_exposed_show">http://thesingingpatient.com/ </span></span></a></span></span></span></span> </div>
</div>
Carla Ulbrich, The Singing Patienthttp://www.blogger.com/profile/15102866927457990437noreply@blogger.com0tag:blogger.com,1999:blog-3528324373828710021.post-73291584912845880362014-12-05T15:16:00.000-05:002014-12-14T15:16:26.113-05:00Refreshed and focused<div dir="ltr" style="text-align: left;" trbidi="on">
Day 71: up early- yet feeling refreshed! A productive day, feeling focused.<br />
<br />
Got a massage. Awkwardly, ran into the guy I used to make appointments
with. I think I will switch back to him. New guy talks too much. Of
course the other guy has such a thick accent that I can barely
understand him.<br />
<br />
Didn't weigh myself. Fought major chocolate cravings late in the evening. Probably due to end-of-long-day fatigue. But I won!<br />
<br />
<div class="text_exposed_show">
Having weird tmj symptoms for no discernible reason. Just my jaw making noises. No pain, no headaches. Odd.<br />
<br />
Pretty sure I will be crashing at a reasonable hour tonight- who is this person?<br />
<br />
<span class="userContent" data-ft="{"tn":"K"}"><span class="text_exposed_show"><span class="userContent" data-ft="{"tn":"K"}"><span class="text_exposed_show"><span class="userContent" data-ft="{"tn":"K"}"><span class="text_exposed_show">Carla</span></span><br />
<span class="userContent" data-ft="{"tn":"K"}"><span class="text_exposed_show">The Singing Patient </span></span><br />
<a href="http://thesingingpatient.com/"><span class="userContent" data-ft="{"tn":"K"}"><span class="text_exposed_show">http://thesingingpatient.com/ </span></span></a></span></span></span></span> </div>
</div>
Carla Ulbrich, The Singing Patienthttp://www.blogger.com/profile/15102866927457990437noreply@blogger.com0