Adventures in Lyme Disease….and the Big Apple…

Waitin for the big blowout on the Hudson...

Waitin' for the big blowout on the Hudson...

I was going to blog today simply about my weekend in New York for the 4th… but this morning…. I saw it…a promo on our air, about my recent bout with Lyme Disease, which airs tomorrow night. Knowing the story was airing pretty soon, I hadn’t written about it here. But now that the promo is gonna be seen…maybe a lot…I just want to tell readers I am OK!  I was happy to do the story, because I thought it would help other people, but the thing I dreaded about it was the immediate large number of friends and neighbors and co-workers, who I never told about it(I mean what do you say? Oh, I have Lyme Disease, by the way) who will now say, “How are you? I had no idea!”

Funny sign and pig nose in a costume shop..

Funny sign and pig nose in a costume shop..

And what is it about New York and Lyme Disease?? That’s where I was…in NYC for my son’s wedding… when I discovered the odd looking rash…the very morning of the wedding, so I really didn’t have any time to cogitate it at all. But I did know I needed to see a doctor as soon as I got home. And I did. My dermatologist, Dr. Eva Simmons-Obrien took one look at it and said, “Lyme Disease.” And it was right after I got home from this weekend’s  trip to NYC that I saw the promo, which kind of brought it all back. Film at 11, as they say.

It was lovely in the Big Apple this weekend, just like it was here in  Baltie….cool at night, warm breezy days. The fireworks over the Hudson were spectacular, though we were about 10 blocks south of where the six barges on the Hudson River actually began. I could see three of the six…and when I saw the video the next day on tv from television’s always privileged advantage point…they looked even more fabulous. But it was nice being at the waterfront with thousands of other people who just wanted to see it for themselves. Everyone was in a good mood, and friendly…lots of families, romantic couples, all ages and descriptions…New York.

Chocolate milkshake at Sweetiepie!

Chocolate milkshake at Sweetiepie!

And the city was quiet, except for that night. Lots of residents beat feet out of town I suppose, leaving the tranquil streets for the rest of us to enjoy. I engaged in a lot of walking around….my favorite thing there…each trip I go I learn that huge beast of a city a little bit better. Going to New York used to be something I rather dreaded, because…I just didn’t know where to start. Know what I mean? You know everything you can imagine is there, but you’re not sure where it is or how to get there. I’m much better now. And we had some great grub…though a lunch at the much talked about Sweetiepie Restaurant in Greenwich Village, was kind of a disaster(though the food was pretty good). And I knew it was gonna be rough the moment we stepped throught  the door. Filled with screaming small children and mommies…it was a cruel thing to do to the hubby…and he got a nosebleed(how perfect is that?) right at the end of lunch. Blood pouring…so he leaves my daughter and I to pay up…only we cannot for the life of us  get the check. So I head to the marble ice cream counter where a beleaguered waiter is making(and spilling) two Bloody Marys for some parents that needed something to soothe their jagged nerves. A woman marches up to the counter and demands those drinks…”We’ve been waiting for those Bloody Marys for a half hour. That’s ridiculous!!”  Yeah, I hear you lady, but I want my check first…I need to blow this joint and fast.  Eating was uphill from there….El Charro in the village for a fabulous paella and sangria….The Spotted Pig for some, well… pig …the next night, and we actually got a table within 30 minutes!

We Megabused up and back…traffic made it a little longer on the return, but hey, it’s all good.

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6 Responses

  1. Donna,
    I hope you are doing well. I have a few family members with the same and are doing very well. I had to laugh as I was reading your blog the promo was running about your Lymes disease!!
    Stay well…

    Tina

  2. Donna,

    Glad to hear that you are okay. When I saw the promo for your story, my first thought was that you would be blogging about it. It sounds like you had quite an adventure in NYC. Hopefully your hubby recovered quickly from his nosebleed!

    As always, love your blogs!

    Trish

  3. Dear Donna,

    Thank you for your anticipated upcoming effort to educate others concerning Lyme and tick borne diseases.

    I am happy to hear you got the rash so it could alert you to the fact you had a problem. I am also happy to hear and that you saw the rash and acted promptly (approximately 50 percent of those infected don’t get the rash in Maryland- and less than 10 percent of children get a rash).

    I am thankful that your doctor was able to recognise the rash and you were treated promptly. (This isn’t always the case and the rash is often misdiagnosed as a spider bite or ring worm or some other malady.)

    You’ll be relieved to know that those who are treated promptly and properly have the best chance of not suffering from the more severe later stages that can become chronic and disabling. (Heart, brain, eyes, joints, muscles and other organ systems can be affected.)

    Good luck and may you stay healthy!

    And don’t forget, do a tick check!

    Lucy

  4. July 8, 2009
    RE: Lyme Disease
    Dear Ms. Hamilton:

    I am the mother of Mandy Hughes, who is featured in the documentary “Under Our Skin” and frequently the spokesperson at events and screenings related to the documentary.

    The Senator Theatre is showing this documentary starting Friday, July 10, 2009.

    As a parent, I had/have all the hopes that my vibrant, healthy and intelligent child would grow up and thrive. Going from a dream of working in the profession of her choice, to within a few short years, wheelchair bound and in extreme pain, which you have seen in the documentary, cripples an entire family.

    What is not seen are the personal struggles/tolls taken on families both emotionally and financially seeking out treatments that the Healthcare community refuses to acknowledge in hopes that this will all “just go away”. The fact is that it will not go away and neither can we.

    Mandy is a native Baltimorean who contracted Lyme here in 1996 and had been misdiagnosed while seeking treatment at Howard County General. She continued to be misdiagnosed at Johns Hopkins and the University of Maryland Hospitals as well. Even though we knew she had been bitten by a tick, had visible rashes and told the doctors about this, they told us that tetracycline (instead of doxycycline) would take care of the problem. It is obvious that it did not and as much as we fought for treatment …. the doctors would not listen.

    We had health insurance at the time Mandy was infected. Because this disease is controversial – she cannot get the ongoing treatment she needs and because of the stigma that this disease now has, she was denied traditional health insurance coverage and is forced to be on Medicare. The Medical Community let her/us down.

    To whatever extent your wider audience can benefit from learning about this insidious disease could possibly be the “push” we need to finally get our arms around this new horrific epidemic.

    We also have to protect the physicians who are willing to treat the infected patients. Allowing them to be “sacrificed” will cost additional lives. We need to educate those physicians who do not understand this disease so that they do not continue to misdiagnose patients costing valuable time, treatment and money.

    PLEASE consider – As Mandy said: LYME – “Listen You Must Educate.”

    Thank you.

    Linda Brace

    I will be putting a copy of the documentary in the mail to you today along with a brochure about Lyme.

  5. Donna

    THANK YOU SO MUCH for telling your story!!! I live on the eastern shore of maryland and have been living a nightmare for over 2 yrs….as many others i was misdiagnosed by SO many doctors including Johns Hopkins doctors…..i battle over 50 symtpoms daily and have pretty much been confined to my home for the 2 yrs….the financial, mental and physical toll that this has taken on myself and family is beyond belief….

    The truth MUST be told about these devasting tick borne illness….im finally on iv antibiotics and hopefully will soon be on my way back to having a life…i travel out of state to a specialist that has had great success in treating late stage tick borne diseases….he is a wonderful doctor and i THANK GOD everyday being one of his patients…

    Also i want to thank Linda Brace for sending a copy of Under Our Skin….this is an amazing documentary that needs to be seen by all….i pass my copy around to many people to view….it will leave you speechless to find out the truth about what is really going on….

    God Bless
    Barbara White

  6. Please let us know how you liked the movie. I think it is wonderful in so many ways and it has also served as a great educational tool.

    Lucy

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