It is what it is...
Let's see. Today is July 23 -- I just checked because otherwise it feels like July 11 for some odd reason. Whatever.
So here's the thing: I still have horrible symptoms -- but some have gotten a little better and others have gone away, and still others are worse. That is the odd odd thing about this disease... it's because of the inconsistent mess it causes that ends up having people being put in the crazy ward or misdiagnosed or left to suffer...
Doctors -- most doctors, I should say -- do not have a handle on this. At all. Which means there are people out there suffering... like the ones shown in Under Our Skin, the documentary movie that is now out in commercial theaters. It is accurate. It is current. And it is what they showed to Congress a few months back. My Dad has seen the movie multiple times and attended quite a few of the conferences where they talk about treatments and symptoms and what to do ... my Dad has become one of my most powerful supporters and I tell you, that is an incredible thing.
Here is the web site -- I have copies of the movie here but have not watched it... living it every day is about all I can handle right now:
www.underourskin.com
It is not easy to talk about this. Being seriously ill, that is. It is even harder to listen to someone talk about it. At first I tried to talk but... well, the look of horror on a person's face... the almost imperceptible backing away, the changing of topic, the stress in their voice -- for most people it is just too much for them to take in. It is overwhelming. It is frightening. They want to help but can't. They can't stand to see such suffering. And it scares them to think it could happen to them. Or that the person talking is making it up. Or a lunatic.
I understand all that now -- I didn't before... I was just so desperate to talk that it all spilled out. I don't let it spill out anymore out of sympathy for people... but that is sometimes very lonely. I just don't talk about it -- unless they ask. And even then I always offer the short version and the option of waving the white flag and saying "I have had enough for now." You have to -- it is real lonely sometimes as a result but you have to. There is only so much that a person can handle.
So it is ESSENTIAL to find doctors who are very very good at dealing with and treating Lyme. Essential. I have three of the best now but I didn't for a long time. And my system is so fragile that doctors who do not know what they are doing can make things much worse in trying to treat you. Lyme is a marathon, not a sprint. Normal medications at normal dosages will not work for you when things are volatile and fragile. And it is not just about the crap you kill off -- you also have to help your body get RID of it all or it continues to poison you. One of my doctors explained it like this:
Let's say that one of the nuclear plants has a meltdown and all of the nuclear waste is now bottled up inside the building. One person says "That stuff has to be gotten rid of so let's just open all the doors on a windy day and let the wind blow through and get rid of it all."
Well, if you do that then you kill a bunch of people for 20 miles downwind of the building. Too toxic, too much all at one time.
HOWEVER if you leave everything shut except for one window that you open a CRACK and let that slowly slowly seep out as wind blows, then the environment CAN deal with it... and over time, it starts to slowly get rid of the huge amt of of trash that is trapped in there.
Nudge. That is the key here with this situation and with Lyme -- you have to find ways to nudge things in the right direction. It is slow... but is HAS to be. And it is essential to find doctors that understand this concept. More than that, YOU have to understand and accept it as well. Fight all you want but what a waste of energy... accept. It is what it is. You cannot change the cards you have been dealt but you can handle yourself with dignity and patience and SURROUND yourself with the best people out there. Let them carry you when you just don't have the strength to walk it yourself.
Those are my thoughts for now... am hanging in there. And making progress... which is huge. HUGE! Will give an update on where things stand soon but am out of energy for now.
So here's the thing: I still have horrible symptoms -- but some have gotten a little better and others have gone away, and still others are worse. That is the odd odd thing about this disease... it's because of the inconsistent mess it causes that ends up having people being put in the crazy ward or misdiagnosed or left to suffer...
Doctors -- most doctors, I should say -- do not have a handle on this. At all. Which means there are people out there suffering... like the ones shown in Under Our Skin, the documentary movie that is now out in commercial theaters. It is accurate. It is current. And it is what they showed to Congress a few months back. My Dad has seen the movie multiple times and attended quite a few of the conferences where they talk about treatments and symptoms and what to do ... my Dad has become one of my most powerful supporters and I tell you, that is an incredible thing.
Here is the web site -- I have copies of the movie here but have not watched it... living it every day is about all I can handle right now:
www.underourskin.com
It is not easy to talk about this. Being seriously ill, that is. It is even harder to listen to someone talk about it. At first I tried to talk but... well, the look of horror on a person's face... the almost imperceptible backing away, the changing of topic, the stress in their voice -- for most people it is just too much for them to take in. It is overwhelming. It is frightening. They want to help but can't. They can't stand to see such suffering. And it scares them to think it could happen to them. Or that the person talking is making it up. Or a lunatic.
I understand all that now -- I didn't before... I was just so desperate to talk that it all spilled out. I don't let it spill out anymore out of sympathy for people... but that is sometimes very lonely. I just don't talk about it -- unless they ask. And even then I always offer the short version and the option of waving the white flag and saying "I have had enough for now." You have to -- it is real lonely sometimes as a result but you have to. There is only so much that a person can handle.
So it is ESSENTIAL to find doctors who are very very good at dealing with and treating Lyme. Essential. I have three of the best now but I didn't for a long time. And my system is so fragile that doctors who do not know what they are doing can make things much worse in trying to treat you. Lyme is a marathon, not a sprint. Normal medications at normal dosages will not work for you when things are volatile and fragile. And it is not just about the crap you kill off -- you also have to help your body get RID of it all or it continues to poison you. One of my doctors explained it like this:
Let's say that one of the nuclear plants has a meltdown and all of the nuclear waste is now bottled up inside the building. One person says "That stuff has to be gotten rid of so let's just open all the doors on a windy day and let the wind blow through and get rid of it all."
Well, if you do that then you kill a bunch of people for 20 miles downwind of the building. Too toxic, too much all at one time.
HOWEVER if you leave everything shut except for one window that you open a CRACK and let that slowly slowly seep out as wind blows, then the environment CAN deal with it... and over time, it starts to slowly get rid of the huge amt of of trash that is trapped in there.
Nudge. That is the key here with this situation and with Lyme -- you have to find ways to nudge things in the right direction. It is slow... but is HAS to be. And it is essential to find doctors that understand this concept. More than that, YOU have to understand and accept it as well. Fight all you want but what a waste of energy... accept. It is what it is. You cannot change the cards you have been dealt but you can handle yourself with dignity and patience and SURROUND yourself with the best people out there. Let them carry you when you just don't have the strength to walk it yourself.
Those are my thoughts for now... am hanging in there. And making progress... which is huge. HUGE! Will give an update on where things stand soon but am out of energy for now.
Labels: dealing with, lyme disease, under our skin
posted by ~wendy. | 1:55 PM
0 Comments:
Post a Comment
<< Home