just got back from the doctor. sed rate=66, temp= 99.8. :(
my strict vegan + gluten free diet is not enough to counteract all the stress.
stress? what stress? Well, I got tons of work in March, plus I filed for bankruptcy, which really freaked me out, plus I'm writing a book, plus my mom sent me 20 boxes of moldy crap that I've left in their basement since having a stroke 7 years ago, which sent me into a fibro attack. I recovered from that only to end up with either morton's neuroma or plantar fasciitis (constant excruciating foot pain- unless i don't ever put any weight on my foot whatsoever, even to get up to go to the can). I went on "vacation"- meaning, we drove 2500 miles round trip, it rained the entire trip and i was in constant foot pain. While on "vacation" I went to a foot doc and he gave me vicodin. All it did was make me sleepy. My foot was still killing me. I finally go some acupuncture and aspirin and it's doing much better, but now I'm freaked out over the string of lupus-ish symptoms- fibro, swelling joints, foot pain, positive lupus lab results... Smells like i'm sliding back downhill towards either a hospital stay (NO!!!!) or prednisone (NO!!!!).
Sometimes I wish I were an "earthling" and I could just have a beer (not an option) or go for a jog (not an option) to blow off some steam and de-stress. Or drink a ton of coffee (not an option) and just power through the stress (not an option). The fact is, once you've got an autoimmune condition/ tendency, you have to make hard choices every day. One of my friends a while back suggested we go shopping and have dinner in the evening, and maybe earlier that day we could go do something else. I had to explain - to both her and myself- that i can only do one big thing a day. If I schedule 2, I might survive them both, but there won't be enough of me left to enjoy the second one. And it will ruin me for my one big thing the next day.
If I pace myself, and do only one big thing a day, I could very well end up doing 365 really neat things in a year. Well, maybe only 300, because sometimes my one big thing is laundry. Still, 300 neat things in a year is pretty great- barbecues with friends, going to the arcade, doinga comedy open mic. But if I don't pace myself, I can end up wasting a lot of time flat on my back in bed watching reruns, staring out the window, and popping pills to kill the pain.
The good part about knowing you have limited resources is (hopefully) you don't squander them on stupid stuff. One of my friends is raising 2 kids (he's a stay-at-home Dad and his wife has a corporate job). At night, he pursues his dream of being a songwriter. Well, being a husband and dad, he can't be gone all night every night, and he's busy all day with the kids- so he has to choose his opportunities wisely. And he tells me this helps him make better choices about the gigs he takes and how he spends his allotted "songwriter" time. It's not just those of us with serious illness having to make hard choices. And given the choice, like everyone else, if I could swap lives with my friend I would not. I've got some skills for dealing with the "devil I know" and would be overwhelmed if I had to learn an entire new set.
I can deal with this. I just need to vent sometimes.
i was able to talk my rheum out of putting me back on prednisone (for now) (I'm just not ready to lose my looks and my locks a 4th time if there's a way around it) and just get some fancy aspirin and topical anti inflammatory. but i'm going to have to start getting lots of acupuncture and learn to handle stress better or I'll be in for hospital stay/ prednisone hell #4. stress is the worst thing for autoimmunity, and stressing about autoimmunity is the strangest irony i can name at the moment...
Monday, June 8, 2009
Wednesday, May 27, 2009
neuroma, my foot!
Something is very wrong with my left foot.
And I think it has to do with wearing cheap crappy tennis shoes with no arch support.
I've either got plantar fasciitis or Morton's neuroma. either way, it means inflammation and constant pain in the bottom of my left foot- the ball of my foot and my toes, including under the nails.
I gotta say, when the feet ain't happy, ain't nobody happy.
This usually happens to women who wear high heels. I don't, but I did recently get a pair of sneakers that look extremely cool but don't quite fit my left foot correctly, and don't have any support for my high arches. But they look cool...
I went to the podiatrist, who gave me some stretching exercises and suggested icing it as well. And gave me some vicodin Rx, which barely touched the pain. The ice helped a little, temporarily. But the minute i stepped on my foot, even for a second, i was in pain for the next couple hours, until about a half hour after i got off it and elevated it.
Notice I said that in past tense. I finally got some relief today, after going to the acupuncturist and then on the way home buying some aspirin. I needed something anti-inflammatory and the MD i had gone to before didn't want to give me predisone, since it might disrupt my lab tests and ongoing treatment of my autoimmune stuff. and I'm not supposed to take ibuprofen because of my history of kidney troubles.
Well it's easy to get stuck in problem-oriented thinking. Especially hen all my facebook friends are telling me they had these same problems for weeks, months, even a year. But finally it occurred to me that aspirin was not forbidden for me. So I got some relief tonight from acupuncture and aspirin, after almost 2 solid weeks of constant pain. My hubby also went out and bought me some fancy Superfeet shoe inserts from eastern mountain sports (at the suggestion of a couple facebook friends).
And at least for now (until I'm foolish enough to forget), I resolve that cheap shoes (and shoes that make me look cheap- e.g., high heels) are not worth the price. My inserts, which cost more than my "cool" sneakers, are now in my old "uncool" sneakers. And my cool sneakers still look really cool- in the trash can.
And I think it has to do with wearing cheap crappy tennis shoes with no arch support.
I've either got plantar fasciitis or Morton's neuroma. either way, it means inflammation and constant pain in the bottom of my left foot- the ball of my foot and my toes, including under the nails.
I gotta say, when the feet ain't happy, ain't nobody happy.
This usually happens to women who wear high heels. I don't, but I did recently get a pair of sneakers that look extremely cool but don't quite fit my left foot correctly, and don't have any support for my high arches. But they look cool...
I went to the podiatrist, who gave me some stretching exercises and suggested icing it as well. And gave me some vicodin Rx, which barely touched the pain. The ice helped a little, temporarily. But the minute i stepped on my foot, even for a second, i was in pain for the next couple hours, until about a half hour after i got off it and elevated it.
Notice I said that in past tense. I finally got some relief today, after going to the acupuncturist and then on the way home buying some aspirin. I needed something anti-inflammatory and the MD i had gone to before didn't want to give me predisone, since it might disrupt my lab tests and ongoing treatment of my autoimmune stuff. and I'm not supposed to take ibuprofen because of my history of kidney troubles.
Well it's easy to get stuck in problem-oriented thinking. Especially hen all my facebook friends are telling me they had these same problems for weeks, months, even a year. But finally it occurred to me that aspirin was not forbidden for me. So I got some relief tonight from acupuncture and aspirin, after almost 2 solid weeks of constant pain. My hubby also went out and bought me some fancy Superfeet shoe inserts from eastern mountain sports (at the suggestion of a couple facebook friends).
And at least for now (until I'm foolish enough to forget), I resolve that cheap shoes (and shoes that make me look cheap- e.g., high heels) are not worth the price. My inserts, which cost more than my "cool" sneakers, are now in my old "uncool" sneakers. And my cool sneakers still look really cool- in the trash can.
health revolution
Here's a great petition for getting health care back to what it ought to be, in my opinion.
Wednesday, February 18, 2009
The Sin of Gluten-y
Just before New Year's I went back on the gluten-free dairy free (GFCF) diet. I'm making great progress with regaining my health. I have almost no headaches anymore- didn't even get my pain meds refilled last time.
I'm also doing Chi Gong, which is somewhat similar to Tai Chi. It is a healing art, adn you don't need to be strong or young or even flexible to do it.
So when I posted on facebook the other day that I was making a tasty batch of gluten-free dairy-free bread in my bread machine, i got lots of questions about gluten - what is it, why am i not eating it, should they stop eating it, and what's my recipe for bread.
My recipe is to buy a bag of Bob's red mill bread mix (available in many grocery stores in the organic food section or at www.vitacost.com ), add rice milk instead of milk and olive oil instead of butter, put it in the machine and wait 3 hours for extremely tasty bread. So much easier (and tastier) than when i went gluten free in 1994!
Many people assume I have celiac disease when I mention I'm eating a gluten-free diet. I do not feel obligated to tell them that I have a lupus diagnosis, and I prefer not to mention that diagnosis, esp. since my blood tests now say otherwise. So I just say (because I think words matter),"No I don't have celiac, but i have a history of other autoimmune problems, and this helps prevent a recurrence." It's not that I think I'm cured, I just believe that I am free from disease at this moment and i want to stay that way- and I know I have to be vigilant in order to stay that way. Not just in what I eat, how I manage stress, but also what I say.
But the interesting thing is Celiac is *also* an autoimmune disease! And according to the book "Alternative medicine" (future medicine pub.) 100% of lupus patients have food allergies.
As to why I chose the gluten free/ dairy free diet, it was originally suggested to me by an MD (who is a pretty progressive guy, is into nutrition and chelation therapy and other stuff that other doctors would give him a hard time for). I had a food allergy blood test and i did come up sensitive to wheat- and cheeses and milk. Other practitioners have since brought it up (after I fell off the wagon). I've done it 3 times now, about a year the first and second times, and it really works. My energy returns, my face clears up, my headaches disappear and other symptoms improve as well.
So if you're intrigued and wondering whether you might have a gluten sensitivity, and therefore could improve your health b y eliminating gluten from your diet, here's an article to check out:
http://ezinearticles.com/?Gluten-Intolerance-Symptoms---How-Do-You-Know-If-Gluten-Is-Making-You-Sick?&id=479404
and here's Bob's wonderful bread mix:
Carla Ulbrich
The Singing Patient: Author, Speaker, Humorous Songwriter and Entertainer
www.thesingingpatient.com
www.facebook.com/TheSingingPatient
www.twitter.com/singingpatient
www.youtube.com/user/carlaulbrich
www.linkedin.com/in/carlaulbrich
http://tinyurl.com/348hroc - Carla's book "How Can You NOT Laugh at a Time Like This?"
I'm also doing Chi Gong, which is somewhat similar to Tai Chi. It is a healing art, adn you don't need to be strong or young or even flexible to do it.
So when I posted on facebook the other day that I was making a tasty batch of gluten-free dairy-free bread in my bread machine, i got lots of questions about gluten - what is it, why am i not eating it, should they stop eating it, and what's my recipe for bread.
My recipe is to buy a bag of Bob's red mill bread mix (available in many grocery stores in the organic food section or at www.vitacost.com ), add rice milk instead of milk and olive oil instead of butter, put it in the machine and wait 3 hours for extremely tasty bread. So much easier (and tastier) than when i went gluten free in 1994!
Many people assume I have celiac disease when I mention I'm eating a gluten-free diet. I do not feel obligated to tell them that I have a lupus diagnosis, and I prefer not to mention that diagnosis, esp. since my blood tests now say otherwise. So I just say (because I think words matter),"No I don't have celiac, but i have a history of other autoimmune problems, and this helps prevent a recurrence." It's not that I think I'm cured, I just believe that I am free from disease at this moment and i want to stay that way- and I know I have to be vigilant in order to stay that way. Not just in what I eat, how I manage stress, but also what I say.
But the interesting thing is Celiac is *also* an autoimmune disease! And according to the book "Alternative medicine" (future medicine pub.) 100% of lupus patients have food allergies.
As to why I chose the gluten free/ dairy free diet, it was originally suggested to me by an MD (who is a pretty progressive guy, is into nutrition and chelation therapy and other stuff that other doctors would give him a hard time for). I had a food allergy blood test and i did come up sensitive to wheat- and cheeses and milk. Other practitioners have since brought it up (after I fell off the wagon). I've done it 3 times now, about a year the first and second times, and it really works. My energy returns, my face clears up, my headaches disappear and other symptoms improve as well.
So if you're intrigued and wondering whether you might have a gluten sensitivity, and therefore could improve your health b y eliminating gluten from your diet, here's an article to check out:
http://ezinearticles.com/?Gluten-Intolerance-Symptoms---How-Do-You-Know-If-Gluten-Is-Making-You-Sick?&id=479404
and here's Bob's wonderful bread mix:
Carla Ulbrich
The Singing Patient: Author, Speaker, Humorous Songwriter and Entertainer
www.thesingingpatient.com
www.facebook.com/TheSingingPatient
www.twitter.com/singingpatient
www.youtube.com/user/carlaulbrich
www.linkedin.com/in/carlaulbrich
http://tinyurl.com/348hroc - Carla's book "How Can You NOT Laugh at a Time Like This?"
Tuesday, February 17, 2009
Rocky Steps
One of the important parts of recovery is to celebrate every milestone. So even though it was a week after the event, today we celebrated my fabulous blood tests by going to Philly to run the Rocky Steps! I made it- i ran (well, jogged, but i didn't walk!) all 96 steps, not once but *twice*! whew!
It was a beautiful day and we got some pictures and even some video (the video is going to take a little while to retrieve from the cameras onto the computer and compile).
I feel I'm slowing reclaiming all my old superpowers of my youth. I look forward to going back to the steps someday later this year and running them two at a time. Maybe I'll even think of something else I want to do to mark the next milestone in health.
My milestones were much smaller after I had the stroke- I couldn't have dreamed of running stairs. in fact, at one point I was trapped in the house I was staying in because I couldn't get up and down the one stair that led to the outside world. I had people take pictures of me then, because I knew if I didn't, no one who hadn't witnessed it themselves would believe I had ever been so sick. I was so sure I would get well and look and feel good again that people would not believe I was ever so ill.
So back then, I would celebrate my victories like being able to wear shoes again, or seeing improvements in blood tests, or being able to get up and down the one stair and go outside by going swimming in the pool out back, or going to the beach with a friend, or going to the thrift shop (Florida's thrift shops are just amazing), or going to a concert.
I've got a great book I've been enjoying put together by a reporter and a photographer who spent a year interviewing people running the Rocky steps to celebrate various occasions, like recovering from cancer, or getting married:
It was a beautiful day and we got some pictures and even some video (the video is going to take a little while to retrieve from the cameras onto the computer and compile).
I feel I'm slowing reclaiming all my old superpowers of my youth. I look forward to going back to the steps someday later this year and running them two at a time. Maybe I'll even think of something else I want to do to mark the next milestone in health.
My milestones were much smaller after I had the stroke- I couldn't have dreamed of running stairs. in fact, at one point I was trapped in the house I was staying in because I couldn't get up and down the one stair that led to the outside world. I had people take pictures of me then, because I knew if I didn't, no one who hadn't witnessed it themselves would believe I had ever been so sick. I was so sure I would get well and look and feel good again that people would not believe I was ever so ill.
So back then, I would celebrate my victories like being able to wear shoes again, or seeing improvements in blood tests, or being able to get up and down the one stair and go outside by going swimming in the pool out back, or going to the beach with a friend, or going to the thrift shop (Florida's thrift shops are just amazing), or going to a concert.
I've got a great book I've been enjoying put together by a reporter and a photographer who spent a year interviewing people running the Rocky steps to celebrate various occasions, like recovering from cancer, or getting married:
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