Wednesday, October 22, 2008
Redirect to my new blog
Michael showed me a nifty new blog tool that lives on our own home server, so I thought I'd move it all over to there, giving me the opportunity to blog on not just this one subject, but other musings and brain farts as they come. So the link to it is here. I hope if you've found this humble beginning worth following, you'll join me over there for more rants, raves, and general ramblings along with any and all Lyme disease information and advocacy that I can muster. And of course, you can also read my wonderful husband's blog on our home website, www.xspectre8.com. He does not speak of Lyme very often as it can be a source of great emotional distress to him, but occasionally he does. I hope to "see" you there!
Monday, October 20, 2008
Fox News reporting on Lyme
Well as much as I dislike the tone of Fox News, I must say I'm very impressed that they are actually covering Lyme Disease. Check out the report. The report says that there are now more cases reported annually than HIV.
All the more reason for us to be excited as we are going to see the film tomorrow in Nashville. I'd have more to report, but it's late and I have a long drive tomorrow. I'll report back when we get home.
All the more reason for us to be excited as we are going to see the film tomorrow in Nashville. I'd have more to report, but it's late and I have a long drive tomorrow. I'll report back when we get home.
Tuesday, October 14, 2008
Good News/Bad News
Well, the bad news is that I will not be organizing a showing of Under Our Skin at the Studio on the Square because the film is no longer available for such showings. The good news is that this is due to the fact that the film will be given nationwide release in 2009. So rather than work on getting a showing together, I'll be working on my presentations for Turn the Corner. I'm hoping the film will generate enough interest in presentations around the Mid South.
I'm just hoping that the film gets any showing at all in Tennessee, especially since many doctors still hold to the belief that "there's no Lyme in Tennessee." Idiots.
I'm just hoping that the film gets any showing at all in Tennessee, especially since many doctors still hold to the belief that "there's no Lyme in Tennessee." Idiots.
Saturday, October 11, 2008
CDC Study Reveals Large Rise In Lyme Cases
The CDC has posted its data on new cases of Lyme disease reports, and the results are not pretty though not unsurprising for the vast majority of Lyme sufferers and LLMDs out there who have been trying to gain wider attention for this disease that continues to go largely ignored. Even Montana, the one state left in the union which had never reported Lyme disease before, has finally joined the ranks with the rest of the US. You can see the actual data here.
Below is a quick rundown of the states most heavily hit:
Today Michael confessed to me something I'm sure has been plaguing his mind for some time now. He always plays his hand close to his chest when it comes to sharing pain or fears, but I suppose the increase in pain lately has caused him to become more vulnerable. He admitted to me his fear that with the current economic crisis looming and the very real possibility that this will make effective treatment for Lyme even more difficult to obtain, he may die from the complications he's been experiencing. It sent chills through me, and the worst part of it was there's nothing I could say to assure him that his fears are unfounded.
Below is a quick rundown of the states most heavily hit:
Top Ten Lyme Disease States (2007)
New York: 4,165 cases
Pennsylvania: 3,994 cases (23% increase over 2006)
New Jersey: 3,134 cases (29% increase over 2006)
Connecticut: 3,058 cases (71% increase over 2006)
Massachusetts: 2,988 cases (109% increase over 2006)
Maryland: 2,579 cases (106% increase over 2006)
Wisconsin: 1,814 cases (24% increase over 2006)
Minnesota: 1,238 cases (35% increase over 2006)
Virginia: 959 cases (169% increase over 2006)
New Hampshire: 896 cases (45% increase over 2006)
Other Large Increases in Lyme Disease (2006-2007)
District of Columbia: 87% increase (116 cases)
North Carolina: 71% increase (53 cases)
South Carolina: 55% increase (31 cases)
Delaware: 48% increase (715 reported cases)
Maine: 57% increase (529 reported cases)
Today Michael confessed to me something I'm sure has been plaguing his mind for some time now. He always plays his hand close to his chest when it comes to sharing pain or fears, but I suppose the increase in pain lately has caused him to become more vulnerable. He admitted to me his fear that with the current economic crisis looming and the very real possibility that this will make effective treatment for Lyme even more difficult to obtain, he may die from the complications he's been experiencing. It sent chills through me, and the worst part of it was there's nothing I could say to assure him that his fears are unfounded.
Thursday, October 9, 2008
Not much to report on the activism point. I did send the letter to the Oprah show, but who knows if it will ever be seen. At least I did that much. It's hard to find a balance between getting the attention we need without appearing like a tin hat wearing nut job. So I'm trying not to be too overzealous. No easy feat considering this disease that I don't even have has stolen my life and wrecked my husband's.
As far as other stuff goes, there's a new development in Michael's situation. He's been having some pretty awful pain in his hip for the past couple of days that's kept him feeling pretty icky. So far the only thing helping is Neurontin, so he's taking enough of that to choke a horse before bed so that he can sleep. This leads us to think he's dealing with a new case of neuropathy. This is not good news as there's really nothing to be done about it, but he's taking this new development as well as can be expected.
We're hoping to take a trip to Brighton to visit my dear friend Sylvia and her new husband John in December. It all depends on a) if we can find a farm sitter, b) if Michael feels well enough c) we can afford it in this economic apocalypse. He's only been overseas once (on a transatlantic cruise), and felt so bad during that trip that he never got out of the hotel or off the ship. Since we'll be in one place the entire time he'll hopefully feel good enough to get out for a few hours here and there. He's a military buff and the RAF Museum and Imperial War Museum calls. I think that will be my day alone to seek out more green men. It's something I've been fascinated by ever since I first went to England.
Anyway, fingers crossed that we get to go.
As far as other stuff goes, there's a new development in Michael's situation. He's been having some pretty awful pain in his hip for the past couple of days that's kept him feeling pretty icky. So far the only thing helping is Neurontin, so he's taking enough of that to choke a horse before bed so that he can sleep. This leads us to think he's dealing with a new case of neuropathy. This is not good news as there's really nothing to be done about it, but he's taking this new development as well as can be expected.
We're hoping to take a trip to Brighton to visit my dear friend Sylvia and her new husband John in December. It all depends on a) if we can find a farm sitter, b) if Michael feels well enough c) we can afford it in this economic apocalypse. He's only been overseas once (on a transatlantic cruise), and felt so bad during that trip that he never got out of the hotel or off the ship. Since we'll be in one place the entire time he'll hopefully feel good enough to get out for a few hours here and there. He's a military buff and the RAF Museum and Imperial War Museum calls. I think that will be my day alone to seek out more green men. It's something I've been fascinated by ever since I first went to England.
Anyway, fingers crossed that we get to go.
Monday, October 6, 2008
We had a nice birthday celebration for Michael on the 3rd, especially considering he was supposed to long be dead due to ALS. I was sorely tempted to call the chief neurologist of the Carolinas ALS Center to just say "You said he'd be completely paralyzed by now. Now six years later he's 40, out of the wheelchair you prescribed for him, and he just built a chicken yard! In ya FACE! " But I guess that would be petty. Oh, who am I kidding?? I'm petty! Petty, I tell you!! I can't help it. He was the ass who never returned our calls once we tried to tell him the good news about a possible alternative to the death sentence of ALS. He could have passed this info on to his other patients. Instead he chose to bury his head, rake in his research dollars, and watch his patients continue to die slow agonizing deaths. What a poozer.
Things are moving along in our plans to have the Under Our Skin showing in Memphis. I've selected a theatre, Malco's Studio on the Square. It's a quaint little art housey type theatre. I've contacted the studio that created the film, Open Eye Pictures. Now it's all up to getting the details together. I've decided to donate proceeds to the Turn the Corner Foundation to assist them in the program for continuing education of medical professionals about Lyme disease.
I came across a wonderful article written by Amy Tan today. Her story is frighteningly similar to Michael's, as was Daryl Hall's. He was interviewed by Fox News recently. I'm not a big fan of Fox News in general, but the interview is worth watching.
On a tiny note, I got my Lyme disease awareness bracelet today. I'm wearing it proudly and hoping lots of people will ask me about it. It's hard to miss, being lime green (of course). You can get yours from the Lyme Disease Foundation.
Things are moving along in our plans to have the Under Our Skin showing in Memphis. I've selected a theatre, Malco's Studio on the Square. It's a quaint little art housey type theatre. I've contacted the studio that created the film, Open Eye Pictures. Now it's all up to getting the details together. I've decided to donate proceeds to the Turn the Corner Foundation to assist them in the program for continuing education of medical professionals about Lyme disease.
I came across a wonderful article written by Amy Tan today. Her story is frighteningly similar to Michael's, as was Daryl Hall's. He was interviewed by Fox News recently. I'm not a big fan of Fox News in general, but the interview is worth watching.
On a tiny note, I got my Lyme disease awareness bracelet today. I'm wearing it proudly and hoping lots of people will ask me about it. It's hard to miss, being lime green (of course). You can get yours from the Lyme Disease Foundation.
Thursday, October 2, 2008
For some reason something has changed again. I'm concerned Michael may have an active infection again. Unfortunately there's not a doctor here that will take his case so we have no way at present of finding out. But his blood pressure is spiking dangerously like clockwork every night so far since we got home from the hospital, he can't get out of bed, he's in terrible pain, and his heart rate never goes below 95 bpm. It's been as high as 117 bpm. I suspect this is pain related. But since he left the pain clinic (you'll have to ask him why he did that because I disagreed with the decision), he has no alternative to ease the pain.
He's been bedridden for four days now. I don't really know what to do or say, so I'm just trying to leave him alone and do my thing. But I'm really worried he's getting sick again. Maybe this wasn't the right time for me to start trying to be more active outside the home and try my hand at activism. I feel guilty for leaving him for any length of time, but guilty for not doing more. It's a vicious circle of self doubt, guilt, anxiety, fill-in-the-crap-feeling-blank.
He's been bedridden for four days now. I don't really know what to do or say, so I'm just trying to leave him alone and do my thing. But I'm really worried he's getting sick again. Maybe this wasn't the right time for me to start trying to be more active outside the home and try my hand at activism. I feel guilty for leaving him for any length of time, but guilty for not doing more. It's a vicious circle of self doubt, guilt, anxiety, fill-in-the-crap-feeling-blank.
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