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I have wondered what to write about this journey I am on with DH. How have we done it? Because we had to. This is my Lyme resumé. This is more or less just the facts of my illness since 1995.

There are many more things going on in our lives than this: amazingly we travel, sometimes for access to medical help; sometimes with friends and sometimes just us. We listen to live music when we can. We eat good food, and drink good wine, when we can. We garden, we research, we fight for our elected officials. We write.
About what we have learned; about what we love.

We have lost a lot: friends, family, our livelihoods, our home. But given just a tiny chance we live well and savor the moment.

This is my story, so there is no judgement to be passed. I came from the straight and narrow engineering world and western or allopathic medicine. But I have learned some things: there is never a bottom to the humility one so sick must learn; there is no medical stone that can't be turned over, which includes Naturopaths, who look at us in the face, and feel our bodies to see where we need help. It takes a team of medical help and a variety of specialties. It takes money we don't have. It takes energy and will we oftentimes don't have.

Many doctors have saved my life over the years. It has gotten harder to say "Yes!" I'll give it a go. But DH hasn't given up, so neither may I.

Update: I know this is long , and not a particularly writerly read, but it took some courage to get this out in public and just to get out the facts of my last twenty years was a way to break the log jam I have going. Thank you so much

May is Lyme Disease Awareness Month. The CDC recently changed their yearly new case count from 30,000 to 300,000. Because many with symptoms like mine are diagnosed with MS, Fibromyalgia, Chronic Fatigue, ALS, Parkins and other "auto" immune illnesses, the diagnosis of a treatable bacterial disease complex is delayed, leading to intractable illness. As with Borrelios (Bb), the diagnosis of these is with markers and rule outs rather than tests.

Follow me below the Kos doodle to read my resumé. Open your hearts and open your minds, there is no one answer and while I welcome support, please don't pity me.

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It's another election night, and I've learned to appreciate whiskey cocktails since the last election. Maybe it's my age or maybe my taste buds need something stronger. I love the mix of a little smoke, citrus, and sweet.

This version of Steve Earle's It's Christmastime in Washington, was performed in Oslo, Norway. I like his speech explaining his thoughts on politics. They know the words. A little rough on the beat, but you'll get the idea.

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One of the hardest things to do when a person is very sick or in sorrow is to leave home: our nest, our refuge...safety. When our local ER doc said, you need to go to a big city with a lot more resources than we have, we realized, we needed to move and move fast if we stood a chance of saving my life. I was rapidly losing my ability to tolerate any food I ate without setting off a hyper allergic reaction. We had to go somewhere else, or not.

At one point in June we had a long talk about what the next months might hold for us. Physically moving until we found the right doctor or doctors; dealing with being very ill and intolerant of food while trying to negotiate driving, living in strange places and going to ERs; daily stress for my DH and just incredibly awful suffering for me; and, oh the money. It was going to be at best a slog, with no guarantees. I asked if I could let go. DH said no. So we held on, literally at times for hours with me hanging on to his hand and watching his face to get through ten seconds, a minute, half an hour, a day.

With the intervention of a head nurse known to a friend, the ER doc in our community hospital started treating me as real and not a head case. At her urging he gave me IV Salumedrol, a steroid injection which bought me time to get to Seattle.

By now the Kossack network was in full swing, and we were on the run, trying to survive.

Little did we know it would be the last time we would consider the Kit House our home, a place to live, our own nest and palette of our lives.


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Thu Dec 29, 2011 at 11:23 PM PST

Assisted Living

by Regina in a Sears Kit House

We have all been surprised that mom is now 94, no one more than she is.  Two weeks before Christmas, as is our custom, Mr. Regina and I went to see mom in her Tanner Springs assisted living apartment to visit and to set up her decorations as we do each year.  

If it had been left up to mom and dad’s kids, we would have liked them in a place of their own much closer to one of us or literally in an apartment built for them in our home or on our property.  They were of a generation which had values driving their decision to sell their paid-for house and move to a “progressive living” community: we don’t want to burden our kids; more subtly, we want our independence; and most subtly, we don’t want our kids telling us what to do.

They made the fateful decision to clean out, sell up and moved into their first place, convincing us it was a cute bungalow in lovely mid Willamette Valley near Mt. Angel Abbey.  Much further away from us, so a longer drive, we went on our first visit. I saw a high rise in open fields and my dad greeted us from a, tiny 650 sq ft apartment. I had to have Mr. Regina meet him, while I got my sobbing over with and dried my eyes. They were not happy there, and moved twice more before dad died at 88.

Mom moved once again into a very large industrial complex, which she and dad had scoped out before he passed away.  It was in a crime filled area, this time in Portland. Mom moved yet again when it was apparent that one of us couldn’t get to her quickly if needed, as she hasn’t driven for a long time. My sibs and I like her current location for several reasons: it’s a smaller facility with about seventy five places; it’s in a neighborhood, not a gigantic complex; it’s one mile and five minutes from my sister’s home; and it’s surrounded by fields and trees. At first the food was much better than the complex too.

A lovely diary from cany got me going: http://www.dailykos.com/...

We have had our concerns along the way.  

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How do we know summer is here? Sunset dinner on the front porch.  

I sat out on our mail order Adirondack bench and thought, I want to remember every bit of this evening.  I have never been more happy and content than sitting on my porch at sunset, watching the bugs over the lawn in the lowering sun while sipping a glass of wine or a well made cocktail.

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A wise endocrinologist once told me in so many words, “All you people with marginalized diseases or illness without known causes are fighting for the same charity or research dollar. What you need to do is to form coalitions.  You have mutual interests and should be cooperating.”

We all have a vested interest in protecting the environment and living in and with a healthy ecology.  Nowhere does this become more clear than in the realm of vector and tick-born diseases.

“The term ‘climate change’ conjures images of melting ice caps and rising sea levels that threaten coastal cities and nations. But just as important is how increasing temperatures and fluctuating precipitation levels will change the distribution of dangerous pathogens. The health of wild animals is tightly linked to the ecosystems in which they live and influenced by the environment surrounding them. Even minor disturbances can have far reaching consequences on what diseases they might encounter and transmit as climate changes.”
Dr. Steven E. Sanderson
President and CEO of the
Wildlife Conservation Society

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This third week of our exploration of France, finds us in Dijon. Dijon is an old city, one of the largest in France in a farm region and geographically just west of the Alps.

We are here looking at the possibilities of relocating as we approach retirement. We are not up and leaving because we don't like the politics in the US , which we decidedly don't.  We are taking a serious look ahead at our economic and health security and believe we might not be able to survive in the US. Many other countries, including France, offer not only a better economic opportunity, but more secure health care and a much more compatible political environment.

Follow me below the fold.

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Maybe everyone has their limits. I know I do.

Here is an item from the front page of Huffington

The Night Beat: Angry Obama Expected Tomorrow
MAY 13 2010, 9:11 PM ET |   Comment

President Obama is angry about the oil spill, its magnitude, and BP's stalling -- and tomorrow, he is going to let his frustrations spill out at a late-morning press availability after he meets with senior officials.

Tonight, Obama raised $1.3 million for the Democratic Congressional Campaign Committee. He was in a fighting mood, calling Nancy Pelosi the type of person who is "elegant even as she's ripping your heart out. If you mess with her."

A few comments below the fold. (Do newbies know what this means?)

Poll

Should we stick with BP?

1%1 votes
1%1 votes
0%0 votes
14%8 votes
73%42 votes
3%2 votes
5%3 votes

| 57 votes | Vote | Results

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Very early in the new administration, Dawn Johnsen was nominated for DOJ Office of Legal Council.

The Repugs objected to the appointment not because she is progressive on many issues, but because she sat as legal counsel to NARAL.  This position and her opinions would have nothing to do with her work at DOJ.

From the Washington Post today...

Senate confirms several Obama nominees
If passing health-care reform was the Senate's Christmas present to President Obama, then the confirmation of more than 30 of his nominees might as well serve as stocking stuffers or a year-end treat.

The Senate confirmed the nominees after voting on health-care reform and a raise in the debt ceiling.

But it also referred six nominees back to the White House for reconsideration, including three senior officials for the Justice Department: Dawn E. Johnsen, nominated to oversee the Office of Legal Counsel; Mary L. Smith, tapped to head the Tax Division; and Christopher H. Schroeder, nominated as assistant attorney general for legal policy.

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Hello everyone.  I just couldn't stand it anymore, so I called Rep. Anthony Weiner's NY-09 office then at their request the DC office.

Me:  Is Rep. Weiner's Single Payer amendment going to be scored by the Congressional Budget Office?
Nice person:  Let me check.
Nice person:  Yes, it's being scored right now.  The rumor that the amendment will not come to the floor is not true.  Any floor item must be scored.  
Me:  May I post this on DKos?
Nice person:  You bet.  
NY-09 Nice person:  We sure have noticed a lot of comments about Rep. Weiner on the site.
Me:  We like his outspoken support and straight talk about insurance companies and Single Payer.

I told them that it wouldn't surprise me if the cost was the best of all the bills on HCR.  They both said they sure hope so.

This is a portion of an email letter I sent this August when we thought all was lost...below the fold.

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Hello everyone, this is my first diary.  If I make mistakes or need edits, feel free.

I have been following the health care legislation and blogosphere on the different options being considered.

Today I really wanted to know how things were going with Rep. Weiner's Single Payer (HR 676) amendment in the Health Subcommittee.  This is under Waxman and is chaired by Frank Pallone.

Google, and even Rep. Weiner's site did not answer my questions, so I called them.  Even though I am nowhere near his district, I had a pleasant and informative chat with an intern at the end of his day.  I told him I just didn't want to get depressed with all the talk about doom to  health care reform, so how are things going?

Here are some things I heard and learned.

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