Linda S- we made it to the weekend!! yay!!! Hope that you have a calm one and not too much running for ya. I hear you on the school work. I am not sure if its good or not but with the kids being in HS I have a much smaller role with the school stuff. Its a relief to not have to sit over them while they do it but its hard to give up that level of knowing what they are doing.
Laurie- mmmm, pizza and wine- 2 of my favorite foods! I have to do some uploading to the gallery today too. See ya in there
Nana- that happened to us too! It will never ever make sense. Its not down by a lot- maybe $10 a month, but I'll take it!!!!
Yay for sun!! That is how I feel today too. Now if it would just warm up and melt all of this icky snow!!!!
Happy birthday hugs to C-man!!
arty:
Phyllis- never worry about the soapbox to me- it is always good to gather different perspectives and such. I wish I could get a job that had benefits. But sadly, I need the flexibility of my schedule to do lots of drs visits (every 4 weeks with Gary, used to be every other month with the kids, but now we are at every 4 months for them and for me) plus with Gary's disability, much of the house/car/bills stuff falls on me too. And being sick myself makes that hard on my body. So that is one part.
The other part is that I can't get a PT job or one "over the table" b/c I can't afford to lose the kids' health insurance that they get through the state. The state pays the premiums so i only have to worry about co-pays. But if I claim any salary I would lose that and I would basically be working just to get health insurance for them. (yes this system sucks on all ends).
As for the lyme controversy, oh hell yeah. Its a huge one. Its actually quite interesting and ful of conspiracy theories which are neat if you were not living in it. The super quick version is that the IDSA (Infectious Disease Society) claims that chronic lyme does not exist and can be treated easily with 2 weeks of doxycycline. Most people will only ever experience joint pain and get the classic bulls eye rash.
However, that is pretty much BS but that is what the insurance companies will use as their criteria to pay for treatment. The insrance co's go after lyme doctors who treat patients like us which is why they cannot accept any insurance for fear of losing the medical license. It also makes it hard to get meds covered because why would the insurance co want to pay for years of medical treatment if they can easily say that this disease is all in our heads? So they just deny it all, which is why we have to pay for Gary's PICC line and all of his IV abx out of pocket.
One of the theories about why the IDSA is doing this is because of Plum Island NY which was/is a bio-lab located just a few miles south of Old Lyme CT. There are theories (well documented, in fact) that the govt was working on bio-warfare research there during the cold war. One of the projects was to weaponize Lyme Disease. They had several breaches in safety and it is possible that ticks that were infected with Lyme and other diseases (such as Bartonella, Babesia) "escaped" and then were carried by migratory birds (African swallows carrying coconuts? LOL) north to Old Lyme CT and then spread by mice and other rodents throughout the Northeast and beyond.
You can take your tinfoil hat off now. That part is done. hahahah!!
I always feel ike a looney tune when I try to explain that but there has been a ton of investigative reseah done on this lab and its pretty chilling.
Last bit of info on some of the research:
There is a fabulously done documentary Under Our Skin that explains all of this. And Pamela Weintraub wrote a book about it as well: ..... crap, I am blanking on the name of the book....... no surprise... I can see the cover, just not the title...
Anyway- I try very hard to pass the word around since it affects so many people and there is so much mis- and dis-information out there. I hope this makes a bit more sense to everyone about what we go through and why it is so hard.
