Tennis star Venus Williams has won Wimbledon five times, yet when the 2012 tournament started last week she was bounced 6-1, 6-3 in the first round. Just like that -- she was done. I've always liked watching Venus play, but I really started cheering for her when I learned that she has an autoimmune disorder called Sjogren's Syndrome. Diane Pucin of the L.A. Times wrote that the disease "can leave her [Williams] feeling lethargic even when she has rested and
eaten well and treated her body as if it is a precious heirloom. But the thing about precious heirlooms is that they can't just be taken off the shelf, dusted off and made new again."
I had never heard of Sjogren's (SHOW-grins) until my rheumatologist had me tested for the disease last year. I didn't want to do the test -- I was sick of tests and the accompanying poking and prodding -- but I think my rheumatologist is brilliant, so I agreed. She ordered a lip biopsy, and it was about as fun as it sounds. A doctor numbed my lip, made an incision inside my mouth, and then used tweezers to pull out about 5-7 tissue samples from my salivary glands. I cried -- not because it hurt, but because I was scared. All of the testing takes it toll emotionally.
I've lost track of how many diseases I've been tested for over the past five years. And most of the tests aren't "one and done" -- I repeat them every six months, or every year, or whenever something else weird happens with my body. My case is challenging because I tend to show (and test positive for) different things, yet I don't always fall neatly into a diagnostic category. That's the case with Sjogren's. My test result was, in fact, positive. But, since I was on the "low end" of the testing scale, I didn't receive an official diagnosis from UM. I tested positive, but all that the doctors are willing to say is that I have Sjogren's-like symptoms. I take 400 mg of Plaquenil a day as a result.
My kidney disease, IgA Nephropathy, is also an autoimmune disorder, and the UM doctors aren't sure how the IgA and the Sjogren's fit together -- if they do at all. But I'm glad I'm in a healthcare system where the doctors collaborate on my care, and I'm sure they'll figure it out in due time. And I'm so focused on my kidneys that I never even think about the Sjogren's -- that is, until there's a major tennis tournament. Then I remember, and I watch Venus, and I hope that she wins!
Saturday, June 30, 2012
Friday, June 22, 2012
Thursday, June 21, 2012
More Labs
I had my protein/creatinine urine ratio tested again, and there's been some improvement since March.
Reminder: The normal range for this is 0.01-0.18. Anything above 0.18 is considered elevated and indicates something called proteinuria -- excess serum proteins found in the urine.
My results:
1.03 in June 2012
2.04 in March 2012
It's still very high, but I'm glad it's not as high as it was in March.
My results:
1.03 in June 2012
2.04 in March 2012
It's still very high, but I'm glad it's not as high as it was in March.
Wednesday, June 20, 2012
No Guidance Needed
I have a very clear memory of Mr. Davis, my high school guidance counselor. His physical presence was unremarkable, but he once told me something that left an indelible impression.
His exact words:
"You will never amount to anything in life if you don't take a full math and science curriculum."
Ouch. Thanks, Mr. Davis, for failing to notice my writing talent and my interest in the humanities. That's a mighty well-rounded view of education you have, sir.
My high school math and science courses consisted of biology, algebra and trigonometry. And then I'd had enough. Mr. Davis wanted me to take calculus, chemistry and physics, but I had zero interest. His method of motivation was the threat/insult mentioned above, and if anything that just made me resist his idea even more. Anyone who knows me knows that the harder you try to talk me into something, the more I resist. Taunting me won't help.
I never took the courses that he suggested. In college my math and science experience was just as sparse: two math classes and one science course -- geology -- otherwise known as rocks for jocks. I took every English class I could find and filled the rest of my schedule with business and humanities courses. I loved college.
Now that I'm older, and I'm learning to live with CKD, I wish Mr. Davis had been more prophetic and said something like:
"One day, when you're much older, you may have a chronic illness that will require deciphering lab work and understanding how the human body works. You may want to take some more science courses."
I probably would have blown that off, too, but who knows? I do get very frustrated trying to make sense of my test results and trying to understand what's going on with my body. Case in point: This weekend I was at a wonderful outdoor party with close friends when I suddenly realized that I couldn't regulate my body temperature. It was SO hot (I was in Chicago, and it was crazy warm), and despite drinking water and going into the house to get into the air conditioning, I got to the point where I needed to go to the basement (the coldest place in the house) with a large ice pack on my head. It took about an hour for my temperature to return to normal. For a brief period I was very scared, as my body just felt completely out of control.
I'm now Googling homeostasis and trying to understand the role my kooky kidneys play in all of this. Was the weekend mishap due to my kidney disease? Or my meds? I'm still not sure. I've never had a reaction to the heat like that.
What I do know is that kidneys do a lot more than just make pee. They are responsible for regulating blood water levels, re-absorbing substances into the blood, maintaining salt and ion levels in the blood, and regulating blood pH. And I know that my kidneys have some challenges, so I need to be extra careful when I'm in extreme heat.
I'm still frustrated, but I'm starting to learn. Not bad for an English major, eh?
His exact words:
"You will never amount to anything in life if you don't take a full math and science curriculum."
Ouch. Thanks, Mr. Davis, for failing to notice my writing talent and my interest in the humanities. That's a mighty well-rounded view of education you have, sir.
My high school math and science courses consisted of biology, algebra and trigonometry. And then I'd had enough. Mr. Davis wanted me to take calculus, chemistry and physics, but I had zero interest. His method of motivation was the threat/insult mentioned above, and if anything that just made me resist his idea even more. Anyone who knows me knows that the harder you try to talk me into something, the more I resist. Taunting me won't help.
I never took the courses that he suggested. In college my math and science experience was just as sparse: two math classes and one science course -- geology -- otherwise known as rocks for jocks. I took every English class I could find and filled the rest of my schedule with business and humanities courses. I loved college.
Now that I'm older, and I'm learning to live with CKD, I wish Mr. Davis had been more prophetic and said something like:
"One day, when you're much older, you may have a chronic illness that will require deciphering lab work and understanding how the human body works. You may want to take some more science courses."
I probably would have blown that off, too, but who knows? I do get very frustrated trying to make sense of my test results and trying to understand what's going on with my body. Case in point: This weekend I was at a wonderful outdoor party with close friends when I suddenly realized that I couldn't regulate my body temperature. It was SO hot (I was in Chicago, and it was crazy warm), and despite drinking water and going into the house to get into the air conditioning, I got to the point where I needed to go to the basement (the coldest place in the house) with a large ice pack on my head. It took about an hour for my temperature to return to normal. For a brief period I was very scared, as my body just felt completely out of control.
I'm now Googling homeostasis and trying to understand the role my kooky kidneys play in all of this. Was the weekend mishap due to my kidney disease? Or my meds? I'm still not sure. I've never had a reaction to the heat like that.
What I do know is that kidneys do a lot more than just make pee. They are responsible for regulating blood water levels, re-absorbing substances into the blood, maintaining salt and ion levels in the blood, and regulating blood pH. And I know that my kidneys have some challenges, so I need to be extra careful when I'm in extreme heat.
I'm still frustrated, but I'm starting to learn. Not bad for an English major, eh?
Monday, June 11, 2012
Validation
I attended a class today called "Taking Control of Kidney Disease." It was offered by Davita and led by a nurse and a registered dietician at a Detroit-area hospital. When I registered, I was told that there are typically 5 to 15 people per session, and that family members were welcome.
As excited as I was to take the class, I was worried what I would find when I walked in the door. I was afraid that I would be the only one there alone. Seems like I've used the word "alone" a lot lately. I know I have a big support circle, and a close family, and tons of great friends. So I'm not sure why I keep thinking that I'm in this alone. Yet I pictured a room full of people with CKD flanked by their loving families and me -- off in a corner -- fending for myself. (Am I dramatic, or what?)
I was wrong, as usual. There were only two people in the class -- me and a woman who was about 25 years older than me. I have a nephrologist at U-M. She has a family doctor who isn't answering her questions and is reluctant to refer her to a specialist.
The material was solid: ways of coping with CKD, understanding lab results, dietary guidelines, questions to ask your health care team. Stuff like that. They gave us a nice health diary where we can keep a record of our journey with CKD. The dietician reviewed my most recent lab work and offered feedback on my situation from a nutritional standpoint. And I learned about some new websites, like KidneySmart, that can help me learn to live with this disease.
My fears were silly. The class didn't expose me as being alone. Instead, the class showed me that I am VERY on top of my health care. I am in control. I have an incredibly smart nephrologist who is closely monitoring my health. I have some challenges, sure, but I've also done a lot to educate myself about CKD.
I'm so glad I went to the class. It wasn't earth-shattering information, but it was validating. And who doesn't enjoy a little validation?
As excited as I was to take the class, I was worried what I would find when I walked in the door. I was afraid that I would be the only one there alone. Seems like I've used the word "alone" a lot lately. I know I have a big support circle, and a close family, and tons of great friends. So I'm not sure why I keep thinking that I'm in this alone. Yet I pictured a room full of people with CKD flanked by their loving families and me -- off in a corner -- fending for myself. (Am I dramatic, or what?)
I was wrong, as usual. There were only two people in the class -- me and a woman who was about 25 years older than me. I have a nephrologist at U-M. She has a family doctor who isn't answering her questions and is reluctant to refer her to a specialist.
The material was solid: ways of coping with CKD, understanding lab results, dietary guidelines, questions to ask your health care team. Stuff like that. They gave us a nice health diary where we can keep a record of our journey with CKD. The dietician reviewed my most recent lab work and offered feedback on my situation from a nutritional standpoint. And I learned about some new websites, like KidneySmart, that can help me learn to live with this disease.
My fears were silly. The class didn't expose me as being alone. Instead, the class showed me that I am VERY on top of my health care. I am in control. I have an incredibly smart nephrologist who is closely monitoring my health. I have some challenges, sure, but I've also done a lot to educate myself about CKD.
I'm so glad I went to the class. It wasn't earth-shattering information, but it was validating. And who doesn't enjoy a little validation?
Saturday, June 9, 2012
It's Not Delivery, it's Giffy's
Happiness is knowing how to make my own low-sodium pizza. It's all from scratch, baby!
Sunday, June 3, 2012
Low Sodium 101
I feel like I'm back in school. I'm trying to learn how to prepare low-sodium meals for myself, and so far it's been a bit overwhelming. I research online. I chart everything in a notebook. And I spend a lot of time standing in aisles comparing sodium content. Researching online is easy in the sense that there's a lot of information out there -- and it's hard because...ummm...there's a lot of information out there. There are resources; there's just so much to read.
Thankfully, there are several excellent low sodium blogs out there....written by people who know their way around a kitchen much better than I do. My favorite so far is Don't Pass the Salt. The woman who writes the blog is amazing. Her husband was diagnosed with congestive heart failure and high blood pressure a few years ago, and she threw herself into figuring out this low-sodium diet stuff. She shares recipes and information about pre-packaged foods, and it's an absolute goldmine. I want to hug her.
Now -- armed with access to her blog -- I'm ready to take the next logical step: I'm going to find where they live and move in with them. I mean, she's already cooking for her husband. How hard would it be to put another plate on the table?????
OK. Maybe not. I realize that I'm on my own on this one.
My first self-assigned task was to make homemade spaghetti sauce. I adore Italian food, but canned spaghetti sauce is loaded with sodium. Most brands run more than 450 mg sodium for a 1/2 cup of sauce. Yikes! On Friday I went to three different stores (Whole Foods, Buschs, Walmart) looking for the lowest sodium content I could find for canned, crushed tomatoes. I found a brand at Whole Foods -- bionaturae -- that has 30 mg sodium per 1/2 cup. I thought that the Dei Fratelli brand I found at Walmart had that beat at 15 mg sodium -- until I realized that was based on 1/4 cup. Good thing I was paying attention in elementary school math classes...
I followed a recipe that I found on the Don't Pass the Salt blog:
1 28-oz can salt-free/low sodium crushed tomatoes
2 tablespoons extra virgin olive oil
1/2 small onion, finely chopped
2-3 cloves garlic, minced or pressed
1 teaspoon dried oregano
2 teaspoons dried basil
1/4-1/2 teaspoon sugar
Saute onion in olive oil until translucent; add garlic and cook until fragrant. Stir in tomatoes, herbs and lesser amount of sugar. Bring to simmer; lower heat and simmer until thickened slightly, around 10 minutes. Taste, and add more sugar if needed.
I made the sauce and would give it a grade of B-.
It was alright, but I don't think I nailed the right herb combination. And, considering that I have zero cooking skills other than being able to read a recipe, I'm at a loss. I want to improve the flavor, but I'm not sure how. I'm hoping one of the Super Chefs in my family can help.
Until then, I'm planning my next task: homemade dough so I can make my own pizza. Should be entertaining.
Thankfully, there are several excellent low sodium blogs out there....written by people who know their way around a kitchen much better than I do. My favorite so far is Don't Pass the Salt. The woman who writes the blog is amazing. Her husband was diagnosed with congestive heart failure and high blood pressure a few years ago, and she threw herself into figuring out this low-sodium diet stuff. She shares recipes and information about pre-packaged foods, and it's an absolute goldmine. I want to hug her.
Now -- armed with access to her blog -- I'm ready to take the next logical step: I'm going to find where they live and move in with them. I mean, she's already cooking for her husband. How hard would it be to put another plate on the table?????
OK. Maybe not. I realize that I'm on my own on this one.
My first self-assigned task was to make homemade spaghetti sauce. I adore Italian food, but canned spaghetti sauce is loaded with sodium. Most brands run more than 450 mg sodium for a 1/2 cup of sauce. Yikes! On Friday I went to three different stores (Whole Foods, Buschs, Walmart) looking for the lowest sodium content I could find for canned, crushed tomatoes. I found a brand at Whole Foods -- bionaturae -- that has 30 mg sodium per 1/2 cup. I thought that the Dei Fratelli brand I found at Walmart had that beat at 15 mg sodium -- until I realized that was based on 1/4 cup. Good thing I was paying attention in elementary school math classes...
I followed a recipe that I found on the Don't Pass the Salt blog:
1 28-oz can salt-free/low sodium crushed tomatoes
2 tablespoons extra virgin olive oil
1/2 small onion, finely chopped
2-3 cloves garlic, minced or pressed
1 teaspoon dried oregano
2 teaspoons dried basil
1/4-1/2 teaspoon sugar
Saute onion in olive oil until translucent; add garlic and cook until fragrant. Stir in tomatoes, herbs and lesser amount of sugar. Bring to simmer; lower heat and simmer until thickened slightly, around 10 minutes. Taste, and add more sugar if needed.
I made the sauce and would give it a grade of B-.
It was alright, but I don't think I nailed the right herb combination. And, considering that I have zero cooking skills other than being able to read a recipe, I'm at a loss. I want to improve the flavor, but I'm not sure how. I'm hoping one of the Super Chefs in my family can help.
Until then, I'm planning my next task: homemade dough so I can make my own pizza. Should be entertaining.
Friday, June 1, 2012
One Week
I have one week to get my act together.
My blood pressure has been high for a few weeks now, and my nephrologist is giving me one more week to try and get it back under control. My goal is to be at 125/75 -- and back in late March and early April I was right in that target range. All was well. I'm not sure what's going on, but things are now drastically different. Here's a sampling:
May 24 158/86
May 25 132/83
May 26 170/97
May 27 160/98
May 28 144/87
May 29 144/84
May 30 150/92
May 31 149/102
June 1 146/97
To say I'm concerned would be an understatement.
The doctor has me on a strict low-sodium diet (1,500 mg or less of sodium a day). I have been instructed to keep charting this and then report in again on Thursday, June 7. I've also been encouraged to exercise and to manage my stress. I've been walking every day since my trip to Colorado and even did a 10-mile bike ride last weekend with Lori and Chris H. It's the stress management part that hasn't been going so well for me.
On June 7 the doctor will decide the next course of action.
But I have one week. I can do this!
My blood pressure has been high for a few weeks now, and my nephrologist is giving me one more week to try and get it back under control. My goal is to be at 125/75 -- and back in late March and early April I was right in that target range. All was well. I'm not sure what's going on, but things are now drastically different. Here's a sampling:
May 24 158/86
May 25 132/83
May 26 170/97
May 27 160/98
May 28 144/87
May 29 144/84
May 30 150/92
May 31 149/102
June 1 146/97
To say I'm concerned would be an understatement.
The doctor has me on a strict low-sodium diet (1,500 mg or less of sodium a day). I have been instructed to keep charting this and then report in again on Thursday, June 7. I've also been encouraged to exercise and to manage my stress. I've been walking every day since my trip to Colorado and even did a 10-mile bike ride last weekend with Lori and Chris H. It's the stress management part that hasn't been going so well for me.
On June 7 the doctor will decide the next course of action.
But I have one week. I can do this!
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