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Off the Radar

Each day I think I will post, and each day my focus is diverted. So I’ve been off the radar lately.

My new primary physician has referred me out to multiple specialists and for some testing. I wasn’t thrilled to say the least, but it was for the best as they have found a growth on a lymph node in my neck. It was indeterminate with the ct scan. We’ll see what happens with that when I go to see the ENT next week. I already saw the gynecologist and the gastroenterologist and have a future appointment with a Rheumatologist. It’s exhausting seeing so many doctors as most lymies completely understand, but now I feel as though she was right in checking everything to rule out simultaneous illnesses. My next LLMD appointment is Monday. I’m ready to move forward with my treatment regardless of any other processes. Per his recommendations I’ve been virtually gluten-free, reduced my sugar intake, reduced my caffeine intake and have been walking or biking everyday. Some days I literally drag myself and hold on to keep from losing my balance, but I’m determined to fight this. Bring it on; I’m fighting for my life, for my family, and for my friends.

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Posted by on April 23, 2013 in Lyme Disease

 

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Video

Yolanda Foster Accepting the Star Light Award at the LRA Gala

 

 
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Posted by on April 11, 2013 in Lyme Disease

 

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Thank you to psychologytoday.com!

This article speaks to anyone suffering with chronic illness as well as those closest to them.  Thank you to physhologytoday.com for the post!

8 Things I Miss Most as a Result of Chronic Pain and Illness

      What do you miss most because of chronic health problems?
Published on April 10, 2013 by Toni Bernhard, J.D. in Turning Straw Into Gold

Lady Lilith by Dante Gabriel Rossetti

When I began to gather my thoughts for this piece, I asked my husband what he thought. It was eye-opening. Even after all these years, I forget that his life has been impacted as much as mine by my health limitations. This is partly because he’s changed his major task in life to that of caregiver and partly because we can no longer do most of the things we liked to do together. So this piece on “things missed” applies to caregivers and loved ones too.

Two notes before I share my list. First, I’m trying to keep a non-complaining tone as I write. Complaining does me no good. These are factual observations and I hope they come across that way. Second, it’s good to remember that there’s a tendency to rewrite our past and put it on a pedestal: “Those were the good old days.” But, in reality, my life before I got sick was a mixture of pleasant and unpleasant experiences, good times and rough times. For example, you’ll see “Time in Nature” on the list of what I miss. But being outdoors when the mosquitoes were biting or when it was over 100 degrees in the shade…that I don’t miss!

1. The ability to be spontaneous

My guess is that this is #1 on most of your lists. Having to painstakingly plan everything out is not particularly fun. Having to then impose it on others is never fun. A few months ago my brother and sister-in-law drove from about an hour away to have dinner with us. But we couldn’t just say, “Come in the afternoon and we’ll visit and then eat a leisurely dinner,” because that won’t work for me. If I visit in the afternoon, I won’t be able to join them for dinner. And if they only come for dinner, it had better be an early one because I turn into a pumpkin at about 7:00. So they came at 4:30 and we ate dinner at 5:30. It was great to see them, but there was nothing spontaneous about the occasion—at least not to me.

If people unexpectedly call and say they’re in town and would like to come over for a bit, whether I can visit depends on the timing. I can’t get through the day without a nap…and then there’s that turning into a pumpkin in the evening that I referred to. Sometimes when they arrive, I find myself rushing off to the bedroom, as if I’m hiding out from them. Hiding out from people I want to see can be emotionally wrenching. Our house is small enough that, once I’m in the bedroom, at least I can lie on the bed and listen to everyone talking so long as I leave the door open. But that can be frustrating and painful when the conversation turns to something I’d like to participate in.

Then there’s the lack of spontaneity to be able to do something on the spur-of-the-moment, and this  definitely impacts my husband. “Wow. Lincoln is playing in town. I’d love to see it!” But then comes the dose-of-reality voice in my mind: “Nice idea but it’s 2 1/2 hours long, so with the previews and ads, that’s closing in on three hours—much longer than you can sit up for. When you face that kind of wait at a doctor’s office, you have ask for a room to lie down in. Must let Lincoln go I’m afraid.”

2. Variety

They say variety is the spice of life. My spice rack is pretty empty. I’m not complaining. It’s just the way things are. I know how fortunate I am to live in a comfortable house with a loving partner, but the fact is, every day is much the same for me and, some days, that “sameness” can get me down. My husband and I don’t even have the questionable luxury of dealing with variety in my health issues! Conversations between us about my health are always the same since it’s remained almost unchanged for a dozen years.

People watching

I miss the variety that comes from seeing different people. As a teacher, I used to stare out over a sea of as many as 100 different faces at one time. And when I wasn’t in the classroom, I was a people watcher. Sometimes at restaurants I’d imagine a “back story” to the lives of those I’d be watching. Now I pretty much see the same people every day…and I know their back stories!

3. Being actively involved in the life of my family

My children are grown but I have two granddaughters. I miss going to events at their schools and to recitals and the like. But mostly, I wish I could take them on little outings. A month ago, my husband took the hour drive to our granddaughter’s house for the sole purpose of taking her across the Bay Bridge to ride a cable car in San Francisco.

That’s what I miss.

4. Socializing

The peak hours for socializing coincide with when I’m “down”—noontime (I’m napping) and evenings (I’m that pumpkin). And we’ve found that a partner doesn’t get invited over to dinner when the other partner is sick. Were my husband single, we feel certain he’d get those invitations. We don’t judge others negatively over this because we recognize that they may think he wouldn’t want to come alone, or they may feel uncomfortable about leaving me out. But the fact remains: he has almost as limited a social life as I do.

What I miss most about socializing is something I wouldn’t have predicted. I wrote about this in How to Be Sick: I miss those moments afterward when my husband and I would “debrief” each other about what transpired at a gathering—gossipy though it might be. Who drank too much. Who was such a kick to talk to. Who we might want to invite over. Who we’d be happy never to see again! Now we do that kind of sharing over characters that show up on our TV. Really!

U. C. Davis Arboretum

5. Time in nature

Some of you may miss the wilderness. My time in nature was more “tamed.” I spent a lot of time at University of California—Davis’ Arboretum. It sits next to the law school building where I worked, and I walked the paths that line its creek almost every day. I knew almost every plant and tree and how they look during each of the four seasons. I knew where the little green heron would be watching for fish and where the turtles would be sunning themselves on the banks of the creek. I didn’t miss my walk even if it was pouring rain. I had a big umbrella and special shoes for the occasion.

6. The ability to pursue my former interests

Perhaps you were an active outdoors person or an avid moviegoer or politically active. One of my favorite pastimes was bird-watching. I had a little journal in which I recorded each sighting: the place, the day and time, the type of bird. From a friend who was an expert birder, I learned that the best way to identify a bird was to look for and then memorize some unusual feature. I’d do that and then when I’d get home, look in one of my many bird books and, with that feature in mind, identify the bird. If I couldn’t find it, it went down in my journal as an LBJ, a designation taught to me by another birder friend: Little Brown Job. I still bird watch but my sightings are pretty much limited to what I see from the house: house finches and white-crowned sparrows in winter; doves and robins in spring; a quick fly through of cedar waxwings if I can catch them; scrub jays and the occasional mockingbird year-around.

Scrubber

Scrub jays are so common in California’s Central Valley (we call them scrubbers) that I forget just how stunning they are. Sometimes, I pretend that I’ve never seen one before, making it a rare sighting. When I do, I’m amazed at the incredible beauty of this bird with its iridescent bright blue and silver coloring. Never mind that it’s squawking can drive a person to drink (if I drank…)

7. The ability to putter around the house, engaging in pleasurable tasks

I loved to garden. Now, I occasionally transplant something. But most of my gardening is confined to pulling weeds because they’re what inevitably stare at me when I go outside.

I also loved to paint rooms. (Perhaps this was a holdover from my days as undergrad in college when I painted houses in the summer.) This was one of my joys as a homeowner: paint a room one color and then…paint it another! Now I’m in a bedroom that badly needs painting (as well as a new rug), but I haven’t the ability to do what needs to be done for the preparation and then the disruption. The rug can be replaced…but can I handle being displaced? We’re considering it.

8. Health not being the topic of conversation

I miss not having my health be the elephant in the room whenever I’m around other people. Invariably (and often due to my own tendency to “drift” in that direction), the conversation turns to my health. I miss not thinking about it and I miss not talking about it.

What do you miss? I hope you’ll share your thoughts in the comment link below.

 

 
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Posted by on April 11, 2013 in Lyme Disease

 

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Perhaps I should have seen my dogs’ veterinarian in 2009 rather than my trusted family doctor.  We can run a Lyme test on a dog in 10 minutes with a few drops of blood, but we can’t get human testing down????  Tell me there isn’t something wrong with this picture.

 

 

 

 
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Posted by on April 2, 2013 in Lyme Disease

 

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Spring On and Trudge Forward

It’s so renewing to see the signs of spring. So refreshing to hear the birds singing every morning. Easter Sunday has come and gone, and now certainly, spring has sprung. This fact does great things for my outlook and is a ‘one-up’ mark for living in a region that experiences sharp changes in season.

Since my last LLMD appointment on 2/28, following his 538024_461815143885632_2095065850_nrecommendations have been my primary focus: Keeping my diet as gluten-free and sugar-free as possible and walking every day, along with the medications and herbs. I can’t put into words how difficult it can be to get on the treadmill daily when the soles of my feet are screaming in pain or how excruciating it is to practice yoga although my joints beg me not to. I’m focused and determined to make this work. If only this disease would show me some sign of abating. If only it would back down to some degree, it would show me these efforts aren’t in vain. With this change in season, bring forward renewed hope and a change for the better.

Below is a sugar substitution chart which has been instrumental in reducing refined sugar in my diet.  Also, I’ve found that homemade gluten-free recipes are remarkably more tasty that mixes.  Stocking up on gluten-free flours, flax-seed, coconut oil, vanilla, and baking powder has made it relatively easy, and thankfully, I’m finally get the hang of this type of cooking. 

 Gluten-Free Pancakes

(Yield: one dozen)
2 1/3 Cup gluten-free flour mixture (The mixture I use is: 1.5 cups brown rice flour, 1.5 cups corn starch, 1 cup sorghum flour, 1/2 cup masa harina)
2 tsp. baking powder
1/2 tsp. salt 
 
1 Cup milk (soy or almond milk)
1/2 Cup buttermilk (curdled soy or almond milk using 1/2 T vinegar or lemon juice)
3 Tbsp butter, melted (coconut or canola oil)
2 eggs, beaten (or 6 Tbsp. water and 2 Tbsp. ground flax-seed)
1 T honey
 
You can customize your Pancakes by adding blueberries, chocolate chips, bananas, nuts, etc.
 
Instructions:  Whisk the dry ingredients in a large mixing bowl. Beat the eggs in a separate bowl. Add the remainder of the wet ingredients and whisk.
 
Pour the wet ingredients into the dry ingredients and stir just until the ingredients are combined. Don’t over mix – there will still be lumps in the batter and that’s okay. Set aside.  (I like to let any gluten-free batter or dough rest awhile before cooking.  I’ve found that my baked goods in particular are much lighter this way.)
 
Heat up the griddle over medium heat.
 
Melt a teaspoon of butter on your griddle or non-stick skillet or spray with non-stick spray. 
 
Using a 1/4 cup measuring cup, ladle the batter onto your skillet. Let the pancakes cook and do not touch them until you see bubbles popping in the middle of the pancake like this:
Flip the pancakes
 
They will only cook for a minute or two on the second side. Slip them into a plate that is warming in a 200 degree oven. Put some more butter or spray on your skillet and repeat until your batter is gone.
 
Tips:
Have all of your ingredients at room temperature.
If the pancakes are turning out darker than you like, or if the butter in the skillet is turning brown, turn the heat down. Medium-Low works best for me.
 
If you’re having trouble with the pancakes sticking to the skillet, try adding more butter or try another skillet.
 
If the pancakes fall apart when you flip them, you’re probably flipping them too soon.
 
These freeze nicely with wax paper between each pancake!
 

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sugar-substitution-chart

 
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Posted by on April 1, 2013 in Lyme Disease, Recipes

 

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Posted by on March 20, 2013 in Lyme Disease

 

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Tom Seaver Beating Lyme

NY Mets great and Hall of Fame pitcher Tom Seaver feeling better, winning his battle with Lyme disease

It’s been a living hell of uncertainty, confusion, depression and downright fear. The Mets’ ‘Franchise,’ author of 311 career victories was not himself for the past year or so, but is slowly regaining his championship form after diagnosis.

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NEW YORK DAILY NEWS

PUBLISHED: FRIDAY, MARCH 15, 2013, 12:49 AM
UPDATED: FRIDAY, MARCH 15, 2013, 2:29 AM

ANTHONY DELMUNDO FOR NEW YORK DAILY NEWS

Tom Seaver’s smile returns as the legendary Mets pitcher is starting to feel like his old self again.

ANDREW THEODORAKIS/NEW YORK DAILY NEWS

A pair of aces: Johan Santana (l.) with Seaver.

TAMPA — The voice on the other end of the phone was once again that of a joyful winemaker whose lust for life, fun and good spirits has known no bounds.

But as Tom Seaver confided, in and around expressing his elation at what it was like just to feel good again for more than one day, his life over the last nine months has been anything but joyful.

In fact, it’s been a living hell of uncertainty, confusion, depression and downright fear. The Mets’ “Franchise,” author of 311 career victories and the highest vote plurality (98.84%) of any player elected to the Hall of Fame, was back at work at his vineyard in Calistoga, Calif., when I reached him.

“You caught me on a good day,” he said. “In fact a very good day because this is the fifth straight day I’ve felt really good. You have no idea what that means — to feel good, to feel normal, for five straight days.”

PHOTOS: METS HONOR 1969 WORLD SERIES CHAMPIONS

I admitted I had no idea. I only knew that Seaver’s multitude of friends in baseball have been worried about him, worried because, in the past year, he had become uncharacteristically distant, and when he did make a rare public appearance or pick up the phone, he was not himself. He missed the Hall of Fame ceremonies last summer for the first time since his own induction, although Hall officials attributed that to recent hip-replacement surgery.

ANDREW THEODORAKIS/NEW YORK DAILY NEWS

Nine months into his struggles with Lyme disease, Tom Seaver, shown here at his California vineyard, says he’s almost back to vintage form.

Still, as the unofficial “team captain” of the Hall of Famers, especially those members of his select group of wine connoisseurs (all pitchers) who share an exclusive BYO table at the annual Sunday night induction dinner, he was duly missed.

One of the sharpest and most astute athletes I have ever known was having trouble remembering things, and his thoughts tended to wander and become garbled in transmission.

It was last June, the day after Johan Santana hurled the first no-hitter in Mets history, when Seaver’s friends and fans became alarmed that something was amiss with their hero after he put out a congratulatory statement, saying: “I’ve never met Johan personally, but what I’ve heard about him is he has a big heart and is a huge competitor.”

PHOTOS: METS NEW HALL OF FAME MUSEUM

The only problem with that was Seaver had joined Santana in a half-hour SNY TV special in spring training of 2008 in which they talked at length about pitching strategies.

“I didn’t know what was happening,” Seaver, 68, said this week.

AP

Seaver at Shea Stadium on July 9, 1969, the season the Miracle Mets won the World Series.

“I felt like I had the worst case of the flu every day, and then I was having trouble remembering things and making bad decisions. I was scared. I said to myself: ‘It’s like I’m getting old before my time. Why is this happening?’ I thought I’d had a stroke.”

But for Seaver, after months of private denial, the scariest incident came when his head vineyard worker, who has been with him for seven years, came into the house one morning.

PHOTOS: YANKS, METS ARE PRETTY IN PINK

“I looked at him and I didn’t know his name,” Seaver said.

That’s when Seaver’s wife, Nancy, made him finally go see a doctor. After Seaver underwent an examination and a battery of tests, the doctor informed him that he did not have dementia, had not had a stroke and was not terminally ill. He had Lyme disease.

It was not something Seaver was unfamiliar with, but nevertheless it was a shocking diagnosis. Back in November of 1991, when he was living in Greenwich, Conn., and spending much of his spare time on his favorite hobby — tending to his gardens — Seaver was first diagnosed with the often-debilitating, bacterial disease caused by infectious deer ticks.

KATHY WILLENS/AP

Seaver says goodbye to Shea at the stadium’s closing ceremony in 2008.

Initial symptoms of Lyme disease infections include chills, fever, headache and muscle pain. However, Stage 3 Lyme disease, which can occur months or years after the initial infection, can result in memory loss, speech problems, sleep disorder and an overall feeling of chemical imbalance — all of which Seaver had been experiencing over the last year.

PHOTOS: METS HALL OF FAME INDUCTIONS

Seaver’s initial case was extreme — he suffered Bell’s Palsy on the right side of his face, and the doctors told him at the time that it was so severe that after they treated him with antibiotics, he would never have it again. In Seaver’s situation, a less severe case of Bell’s Palsy, doctors felt, might have returned.

“But once it gets into your blood system, it causes real problems,” Seaver said. “I’m taking 24 pills a day now, most of them vitamins, plus one penicillin pill to get my chemical balance back. It’s a cycle that kills off all the spirochetes that junk up your system. It’s been a slow process in which I’ll still feel like I have a bad case of the flu for days, but these past couple of weeks they’ve been less and less. I haven’t had a glass of wine or a beer in eight months and I don’t miss it.”

When I suggested to him that didn’t exactly sound like a ringing endorsement of his wine — his 2008 GTS Cabernet Sauvignon received a 97 rating from Wine Spectator — Seaver laughed.

“That’s OK, we’re still making terrific wine out here,” he said. “I’m out here right now in the vineyard, going up and down the rows with my clippers. I’m back to working four- to six-hour days out here, and it’s great exercise and most important for the blood flow.”

He sounded like the old Seaver, laughing easily, going on enthusiastically about his grapes, basking in the sunlight after a year of confusion and fear in the darkness.

“I feel,” said Seaver, invoking one of his characteristic baseball metaphors, “like I’m a bunt single away from feeling totally normal again.”

Read more: http://www.nydailynews.com/sports/baseball/mets/madden-tom-nearing-terrific-day-mets-legend-winning-battle-lyme-disease-article-1.1289293#ixzz2Nh6p5SrE

 
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Posted by on March 16, 2013 in Uncategorized

 

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