You know, I am amazingly grateful to have been dealt this challenge of chronic illness. I know, I know, everyone who says that is just being naive. So what, call me naive if you don't think this is a good way of looking at things. Have fun focusing on all that's gone wrong instead.
I always liked to think I was a strong person, the type of person who could bear anything, rise above it, fight, win. But it was never put to the test like this before. Having been there, having sunken, and having slowly, steadily risen up again with nothing but sheer will. Being shown and having proof that I have this kind of resolve and resilience is an amazing gift that most people never, ever get. They don't really know how they'll fare if something terrible happens to them. But I do. Now I know how bright the light is because I was shown the darkness. Now I know how strong the strength within me is because I've had to use it to push back. I was challenged and I met it. And won. I. am. strong.
Wednesday, October 16, 2013
Tuesday, April 2, 2013
Lyme is what you HAVE, not who you ARE
The relationship between a host and its parasite isn't usually a complicated one. Once the host becomes aware of its host status, it tries to eliminate the parasite, often with ease. But having Lyme is waaay different, your 'parasite' doesn't just go away with a quick prescription and a few weeks. If you have chronic Lyme, it's something that you have for a while....years usually.
I struggle with the idea of mentally accepting the Lyme diagnosis, like I'm sure every single Lyme patient does. On one hand, accepting it is good because then you have a target to shoot at (but then again that target is inside you, so...). On the other hand, do you really want to create the mental space for the Lyme bug? After all, you're already giving it physical space. Maybe you don't necessarily want to let it shack up in your mental energy either, most of that is already sucked out in coping with the loss of your work, school, social, even essential day-to-day tasks life.
Making an energetically accepting attitude toward that Lyme bug might make it easier to stick around, maybe it will pick up on your 'it's ok that you're here' attitude and prolong its stay. Yet, you can't always mentally be at war with your body's invaders....can you?
So. How do you accept your infection while not accepting your infection? Think of it like jail. You don't want to be stuck in there with bad guys. But you are. You can tolerate them, but you don't wanna get too chummy. Accepting the current situation is a good reality check, but just because you're locked up together doesn't mean you have to get too comfortable. And remember that it's only a matter of time before you make bail and are free again. All things are temporary. Plus, there's plenty you can do to ensure you get free, and that's the best part.
I struggle with the idea of mentally accepting the Lyme diagnosis, like I'm sure every single Lyme patient does. On one hand, accepting it is good because then you have a target to shoot at (but then again that target is inside you, so...). On the other hand, do you really want to create the mental space for the Lyme bug? After all, you're already giving it physical space. Maybe you don't necessarily want to let it shack up in your mental energy either, most of that is already sucked out in coping with the loss of your work, school, social, even essential day-to-day tasks life.
Making an energetically accepting attitude toward that Lyme bug might make it easier to stick around, maybe it will pick up on your 'it's ok that you're here' attitude and prolong its stay. Yet, you can't always mentally be at war with your body's invaders....can you?
So. How do you accept your infection while not accepting your infection? Think of it like jail. You don't want to be stuck in there with bad guys. But you are. You can tolerate them, but you don't wanna get too chummy. Accepting the current situation is a good reality check, but just because you're locked up together doesn't mean you have to get too comfortable. And remember that it's only a matter of time before you make bail and are free again. All things are temporary. Plus, there's plenty you can do to ensure you get free, and that's the best part.
Friday, March 22, 2013
How do your genes fit?
I'm a mutant! Run for your life! I have genetic mutations, that is.
I've found a complete game changer in my healing: genetics! Genetics is very complicated and complex and your genetic information is PURE GOLD when it comes to healing. You ever wonder why so many people can handle their Lyme Disease (and don't even know they have it!), or why every single treatment plan is different, why some people respond to certain medications and some don't....it's all in the genes, man. Knowing your genetic make up is an absolute game-changer when healing.
At the behest of my favorite LLND, I did a gene test through a company called 23andme. Initially, I was interested in finding out if I have a couple broken genes (specifically ones for detoxifying and mold accumulating). It took me awhile to do the saliva sample and send it off, I guess because knowledge about your genes isn't knowledge you can UN-KNOW. And, your genes are something you can't change, either. But I finally decided, ok, I'd get this done and focus on the few genes that can really complicate healing from Lyme and toxic black mold.
When the results did come back, a whopping 6 weeks later, I was more lost than I was before. Because of the type of lab that 23andme is, they do not interpret your data for you and you receive 40 pages of what looks like serial numbers (but hey - that's because it only cost $99 instead of $800!). MTRR A66G, CBS A360A, and COMT V158M are examples. So you can imagine, I was left scratching my head. I did some sleuthing and found a site that you can run your results through and it kind-of turns it into useful information. The key with this is to have your data interpreted by a nurse or doctor or someone who's familiar with reading raw genetic data.
Anyway, the genes that affect my immunity and healing and were found to be mutated and causing problems are VDS, CBS, and MTRR.
So basically, my body lacks the ability to make a crucial enzyme that's needed to process stuff through the body. And, the previous step to the broken enzyme-maker is also busted. And the one that has something to do with vitamin D absorption, and I think maybe there was another mutation. Great news is that we can work on all of it with specific supplementation in a specific order and time frame to get back on track.
Without knowing this, we would have been shooting arrows in the dark. In my experience, knowing my genetic make up has been positively instrumental in getting this healing done.
Note: I just cannot figure out why I'm unable to reply to comments here on the blog. Oh, computers. I'm stumped and don't like leaving people hanging. So if you do have a comment or question, please get a hold of me on my Facebook page www.facebook.com/waterwithlyme.
I've found a complete game changer in my healing: genetics! Genetics is very complicated and complex and your genetic information is PURE GOLD when it comes to healing. You ever wonder why so many people can handle their Lyme Disease (and don't even know they have it!), or why every single treatment plan is different, why some people respond to certain medications and some don't....it's all in the genes, man. Knowing your genetic make up is an absolute game-changer when healing.
At the behest of my favorite LLND, I did a gene test through a company called 23andme. Initially, I was interested in finding out if I have a couple broken genes (specifically ones for detoxifying and mold accumulating). It took me awhile to do the saliva sample and send it off, I guess because knowledge about your genes isn't knowledge you can UN-KNOW. And, your genes are something you can't change, either. But I finally decided, ok, I'd get this done and focus on the few genes that can really complicate healing from Lyme and toxic black mold.
When the results did come back, a whopping 6 weeks later, I was more lost than I was before. Because of the type of lab that 23andme is, they do not interpret your data for you and you receive 40 pages of what looks like serial numbers (but hey - that's because it only cost $99 instead of $800!). MTRR A66G, CBS A360A, and COMT V158M are examples. So you can imagine, I was left scratching my head. I did some sleuthing and found a site that you can run your results through and it kind-of turns it into useful information. The key with this is to have your data interpreted by a nurse or doctor or someone who's familiar with reading raw genetic data.
Anyway, the genes that affect my immunity and healing and were found to be mutated and causing problems are VDS, CBS, and MTRR.
So basically, my body lacks the ability to make a crucial enzyme that's needed to process stuff through the body. And, the previous step to the broken enzyme-maker is also busted. And the one that has something to do with vitamin D absorption, and I think maybe there was another mutation. Great news is that we can work on all of it with specific supplementation in a specific order and time frame to get back on track.
Without knowing this, we would have been shooting arrows in the dark. In my experience, knowing my genetic make up has been positively instrumental in getting this healing done.
Note: I just cannot figure out why I'm unable to reply to comments here on the blog. Oh, computers. I'm stumped and don't like leaving people hanging. So if you do have a comment or question, please get a hold of me on my Facebook page www.facebook.com/waterwithlyme.
Sunday, March 17, 2013
Like sand through an hourglass
No, I've never been a Days of Our Lives watcher (if that's even the right soap opera that phrase comes from).
Yes, I have been getting better - most of the time, overall I think. I'm still dead tired, having temperature regulations problems, tinnitis, dizziness, headaches, neck pain, and my right knee really hurts, but none of that is nearly as bad as it was a year ago. A. year. a. go.
We're working on refinancing our mortgage and the woman at the bank was asking me about my work history - ha. Since I've been too sick to work (except for these great couple of months before I got too worn out again in the fall), we have to do some extra leg work to do this refinancing business. So naturally, this dear woman was very curious why a perfectly normal-looking person is sitting in front of her telling her she's too sick to work. She vaguely recalled something about Lyme Disease and inquired...is this STILL Lyme Disease? And the answer was, Yup. Since August 2011. That's when I got all weird in my head. It's 2013.
I've been sick for approximately 1 year and 7 months. 1 year and 7 months of feeling lousy isn't that bad, but 1 year and 7 months of wasted productivity is. And don't get me wrong, I count myself lucky - there are plenty of people who are far sicker than I am, have no access to healthcare (thanks a lot, for-profit healthcare system), and have been sick for 15+ years. I count my blessings.
I just wish I could work on all these projects I used to work on. Or could have the energy to make my husband dinner every night.
This is when I have to remember the key to all of this - thankfulness! No, I couldn't spend 5 hours today working on my projects, but yes, I was able to eek out one blog post! No, I didn't have the energy to stand for 45 minutes to wash dishes, but yes, I was able to bring all of them to the kitchen. Don't spend your energy or your time focusing on all the can't's in your life. That won't be worth your time. But feeling better about what you can do is well worth your time.
Thursday, October 25, 2012
This mold house
Mold, mold, mold. Ahhh, that terrible, invisible, frightening thing.
Mold is a big problem, even if you don't have Lyme. And when you do, it's a double whammy of neurotoxins. But take heart, there are plenty of things you can do to make your house safer and healthier that are pretty cheap. (And of course, there are things you can do that are not very cheap)
My LLND told me that I should get my house checked out since many of my symptoms appear to be more mold than Lyme. ! We started out with a vision test for $15 that you can do entirely online, she said this would give us a good indicator as far as how moldy my body has become, and based on those tests we would consider how to treat or further testing that costs more than $15. And here it is: http://www.chronicneurotoxins.com/. The premise is that certain biotoxins affect your vision in a very specific way and this vision test can be an indicator about the biotoxin level harbored by your body. I failed it miserably, and so she ordered a C4a lab test - this is an indicator for the mycotoxin load my body's carrying. (Mold spores themselves whether dead or alive are an allergen, but the living spores also spray out what's called a mycotoxin - this is the big, bad thing that sticks in your body and tries to decompose you). We're still waiting on the C4a results, but based on the mold testing we did on the house (which came back positive for the most poisonous and the second most poisonous mold), my doctor put me on Difflucan, an anti-fungal to get started on some sort of mold-clearing.
So the issue with mold is that it's a neurotoxin - like Lyme. And my doctor put it really plainly as far as the importance and urgency of clearing the mold - both from my house and my body. She said that Lyme wants you alive, it wants to disable you a little bit so that it can thrive - but Lyme needs you alive; mold doesn't. Mold wants to kill you and decompose your body into nothing.
We were able to get our house professionally remediated and we found the source of the problem - leaky basement and leaky pipes. Getting those fixed is the big picture, but there are lots of other little things we're doing to ensure we have a healthy house. (This two-pronged approach is best - eliminate the source that's causing the mold and eliminate the mold stuffs already sprayed into the air.)
Dehumidifiers are essential for damp areas like basements, as well as real HEPA filters in air purifiers (careful with this, lots of air purifiers have really sneaky wording so you have to be sure that you're getting one that truly captures mold spores, as small at .2 microns in size).
Aside from those, a new thing I discovered is Thieves essential oil, the air inspector said that she's seen it work wonders - she's seen spaces go from 25,000 particles of mold per square meter down to the normal 400 particles per square meter, after only spraying Thieves Household Cleaner on mold 2x/day for 2 months! I found the recipe and made my own and have it running in an essential oil diffuser 24/7 (bonus - it smells kind of like cinnamon and spice, perfect for autumn!). I also learned that getting a German made vacuum with a closed system and HEPA filter will be an item to save up for. Normal vacuums, even ones with 'HEPA' filters recycles the air, but the German made vacuums are actually better at cleaning the air than air purifiers - the air that comes out is cleaner than the air that goes in!
Cleaning is also essential - we are now spending much more of our time sweeping, vacuuming, and dusting because dust is the perfect little thing for mold to attach itself to, it's great at riding the dust. At this point, we're still cleaning out the hyphal parts (dead mold spore pieces that are still an allergen).
But now, I can breathe again! I'm still sicker and it will probably take a while for the mycotoxins already present in my body to get cleared out, but we'll get there. One day at a time. Just imagine how much healthier I'm going to be when my body is free of mold and can focus more on executing that Lyme! (Also I feel extra scatter-brained today, so sorry if this post didn't make very much sense, you know how that goes)
Mold is a big problem, even if you don't have Lyme. And when you do, it's a double whammy of neurotoxins. But take heart, there are plenty of things you can do to make your house safer and healthier that are pretty cheap. (And of course, there are things you can do that are not very cheap)
My LLND told me that I should get my house checked out since many of my symptoms appear to be more mold than Lyme. ! We started out with a vision test for $15 that you can do entirely online, she said this would give us a good indicator as far as how moldy my body has become, and based on those tests we would consider how to treat or further testing that costs more than $15. And here it is: http://www.chronicneurotoxins.com/. The premise is that certain biotoxins affect your vision in a very specific way and this vision test can be an indicator about the biotoxin level harbored by your body. I failed it miserably, and so she ordered a C4a lab test - this is an indicator for the mycotoxin load my body's carrying. (Mold spores themselves whether dead or alive are an allergen, but the living spores also spray out what's called a mycotoxin - this is the big, bad thing that sticks in your body and tries to decompose you). We're still waiting on the C4a results, but based on the mold testing we did on the house (which came back positive for the most poisonous and the second most poisonous mold), my doctor put me on Difflucan, an anti-fungal to get started on some sort of mold-clearing.
So the issue with mold is that it's a neurotoxin - like Lyme. And my doctor put it really plainly as far as the importance and urgency of clearing the mold - both from my house and my body. She said that Lyme wants you alive, it wants to disable you a little bit so that it can thrive - but Lyme needs you alive; mold doesn't. Mold wants to kill you and decompose your body into nothing.
We were able to get our house professionally remediated and we found the source of the problem - leaky basement and leaky pipes. Getting those fixed is the big picture, but there are lots of other little things we're doing to ensure we have a healthy house. (This two-pronged approach is best - eliminate the source that's causing the mold and eliminate the mold stuffs already sprayed into the air.)
Dehumidifiers are essential for damp areas like basements, as well as real HEPA filters in air purifiers (careful with this, lots of air purifiers have really sneaky wording so you have to be sure that you're getting one that truly captures mold spores, as small at .2 microns in size).
Aside from those, a new thing I discovered is Thieves essential oil, the air inspector said that she's seen it work wonders - she's seen spaces go from 25,000 particles of mold per square meter down to the normal 400 particles per square meter, after only spraying Thieves Household Cleaner on mold 2x/day for 2 months! I found the recipe and made my own and have it running in an essential oil diffuser 24/7 (bonus - it smells kind of like cinnamon and spice, perfect for autumn!). I also learned that getting a German made vacuum with a closed system and HEPA filter will be an item to save up for. Normal vacuums, even ones with 'HEPA' filters recycles the air, but the German made vacuums are actually better at cleaning the air than air purifiers - the air that comes out is cleaner than the air that goes in!
Cleaning is also essential - we are now spending much more of our time sweeping, vacuuming, and dusting because dust is the perfect little thing for mold to attach itself to, it's great at riding the dust. At this point, we're still cleaning out the hyphal parts (dead mold spore pieces that are still an allergen).
But now, I can breathe again! I'm still sicker and it will probably take a while for the mycotoxins already present in my body to get cleared out, but we'll get there. One day at a time. Just imagine how much healthier I'm going to be when my body is free of mold and can focus more on executing that Lyme! (Also I feel extra scatter-brained today, so sorry if this post didn't make very much sense, you know how that goes)
Sunday, September 23, 2012
Pilgrimage
Pilgrimage: noun; any long journey, especially one undertaken as a quest for a votive purpose.
So this being sick all the time thing is definitely a pilgrimage. It's long. It's a journey. It's undertaken as a challenge, albeit involuntarily. The purpose is to survive and get better.
And boy, am I feeling the challenge right now. I had one month of near-well health - energy, hardly any headaches or pain. It was such a sweet reminder of the goal I'm working towards. So I started to set my life up again - working, resuming classes, even planning my husband's 30th birthday party. Then, WHAMMO! I got sick again. I am resuming treatment, this time with super hardcore, high dose antibiotics (I was able to get away with relatively low dose before) and I'm doing all the things I'm supposed to be doing to get better. Only now, I have work, school, and this party-planning to do. Things were so much easier when I could just stay in bed and be sick. I have no idea how people do 'being sick' AND work, classes, or any other obligation. I commend you, true Lyme Warriors, I know you're out there, working hard and being sick and trying to hold it all together. And in way more dire circumstances than I am right now.
I think at this point, I would rather have less functioning and more pain rather than where I am right now. I have some pain and some functioning, but not enough to meet all the expectations I've committed to. Even after already cutting those expectations in half.
I feel totally lost. Totally inadequate. I have no idea how I'm supposed to organize the mold remediation that has to be done (oh yeah - did I mention we discovered we have the most poisonous mold and the 2nd most poisonous mold in our house? This is making me even sicker.) I can barely get through a 5 hour day at work. I can barely drive. I've outlawed myself from driving on the highway because I had some close calls. Apparently I can't even keep my brain on long enough to pay attention to driving. My dear sweet husband has had a bad year and it's his 30th birthday and I wish I could just keep the details straight and simply plan a freaking party for him. But I find myself not remembering where we are going, what we are doing, or all these other details, let alone how they all are supposed to fit together. This is something I normally would be all over and it would be awesome. He really, really deserves just one fun night. And I totally wish I could give it to him.
I suppose it's just time to be honest with myself and everybody around me. I just can't do this stuff right now. Not that I won't be able to once I get better (whenever that's going to stick), and not because I am some sort of invalid person. It's really simple. I'm just too sick right now.
On the bright side, once we figure out this mold situation and we get it all resolved, I'll probably feel a ton better, right?
In the meantime, I'll just keep chugging along and doing what I can. Counting the blessings that I do have, and trying not to think too much about the rest.
There. That felt good to get out. Now, for the icing on the cake, I'm going to go emotionally eat. Probably some popcorn.
So this being sick all the time thing is definitely a pilgrimage. It's long. It's a journey. It's undertaken as a challenge, albeit involuntarily. The purpose is to survive and get better.
And boy, am I feeling the challenge right now. I had one month of near-well health - energy, hardly any headaches or pain. It was such a sweet reminder of the goal I'm working towards. So I started to set my life up again - working, resuming classes, even planning my husband's 30th birthday party. Then, WHAMMO! I got sick again. I am resuming treatment, this time with super hardcore, high dose antibiotics (I was able to get away with relatively low dose before) and I'm doing all the things I'm supposed to be doing to get better. Only now, I have work, school, and this party-planning to do. Things were so much easier when I could just stay in bed and be sick. I have no idea how people do 'being sick' AND work, classes, or any other obligation. I commend you, true Lyme Warriors, I know you're out there, working hard and being sick and trying to hold it all together. And in way more dire circumstances than I am right now.
I think at this point, I would rather have less functioning and more pain rather than where I am right now. I have some pain and some functioning, but not enough to meet all the expectations I've committed to. Even after already cutting those expectations in half.
I feel totally lost. Totally inadequate. I have no idea how I'm supposed to organize the mold remediation that has to be done (oh yeah - did I mention we discovered we have the most poisonous mold and the 2nd most poisonous mold in our house? This is making me even sicker.) I can barely get through a 5 hour day at work. I can barely drive. I've outlawed myself from driving on the highway because I had some close calls. Apparently I can't even keep my brain on long enough to pay attention to driving. My dear sweet husband has had a bad year and it's his 30th birthday and I wish I could just keep the details straight and simply plan a freaking party for him. But I find myself not remembering where we are going, what we are doing, or all these other details, let alone how they all are supposed to fit together. This is something I normally would be all over and it would be awesome. He really, really deserves just one fun night. And I totally wish I could give it to him.
I suppose it's just time to be honest with myself and everybody around me. I just can't do this stuff right now. Not that I won't be able to once I get better (whenever that's going to stick), and not because I am some sort of invalid person. It's really simple. I'm just too sick right now.
On the bright side, once we figure out this mold situation and we get it all resolved, I'll probably feel a ton better, right?
In the meantime, I'll just keep chugging along and doing what I can. Counting the blessings that I do have, and trying not to think too much about the rest.
There. That felt good to get out. Now, for the icing on the cake, I'm going to go emotionally eat. Probably some popcorn.
Thursday, September 6, 2012
Tease
What a tease. Some of you out there may know that I was able to begin work a few weeks ago - antibiotic-free, relatively symptom-free (well - less symptoms, enough where I could get through an 18 hour a week job anyway). By and large, it was going quite well. Until.
Until I spent all last weekend (it's Thursday as I write this - I think) in bed. It was all too familiar. Tired. Headaches. Stiff neck so stiff it was just roaring, unabating pain. I spent this whole year that way, if I had the presence of mind, I would have been more upset about it at the time.
Not long ago, my dear sweet husband moved the couch and discovered mold on the floor. Black mold. (Ughhhh) He then valiantly proceeded to eradicate it and I had the bright idea that we ought to refinish the floors (it had been a long time since that had been done. We were getting slivers!). WE. Hahahaha. (For the record - I really did mean 'we,' and it did start as 'we' before it went to just 'he.' That super awesome man did the whole thing - sanding, staining, polyurethaning).
So we weren't sure if I was having an acute mold toxicity issue or maybe it was stress from work, but something put me DOWN and out.
I went to the doctor today and got a glutathione injection as well as a vitamin D injection. We deduced that it is both - I've got a mold toxicity problem AND the Lyme is coming back. Great.
I feel so done. My trained brain (that is - the brain I've trained to be hopeful despite hopelessness, to see the bright side in spite of all the darkness, to seek things to be thankful for rather than to seek things to complain about) is telling me that 1 year is a phenominally fast recovery. And of course, naturally a set back is to be expected and even looky-here, we caught things nice and early before I had too much of a regression, so I'm still sittin' pretty and doing well. True.
But my lazy, strictly reactive brain and feelings are so done. I am so sad and mad and frustrated that more time, more resources, more energy have to be spent. And here I was thinking I could host this grand 30th birthday for my husband at the end of the month (who so much deserves it). Now I get to talk to my boss about taking breaks and working less. And I get to drop a class again. And I get to spend a bunch of money again.
I really do feel like throwing a little hissy fit and just crying and stomping around. I did some of that today and it did seem to help. Plus, I guess I would rather be optimistic and happy than grumpy and upset. We'll see. Maybe I'll go back and forth for a few more hours today.
What a tease. 4 weeks of relative freedom from sickness. But, it ok. I would rather have had them than not.
Months of penicillin, here I come.
Until I spent all last weekend (it's Thursday as I write this - I think) in bed. It was all too familiar. Tired. Headaches. Stiff neck so stiff it was just roaring, unabating pain. I spent this whole year that way, if I had the presence of mind, I would have been more upset about it at the time.
Not long ago, my dear sweet husband moved the couch and discovered mold on the floor. Black mold. (Ughhhh) He then valiantly proceeded to eradicate it and I had the bright idea that we ought to refinish the floors (it had been a long time since that had been done. We were getting slivers!). WE. Hahahaha. (For the record - I really did mean 'we,' and it did start as 'we' before it went to just 'he.' That super awesome man did the whole thing - sanding, staining, polyurethaning).
So we weren't sure if I was having an acute mold toxicity issue or maybe it was stress from work, but something put me DOWN and out.
I went to the doctor today and got a glutathione injection as well as a vitamin D injection. We deduced that it is both - I've got a mold toxicity problem AND the Lyme is coming back. Great.
I feel so done. My trained brain (that is - the brain I've trained to be hopeful despite hopelessness, to see the bright side in spite of all the darkness, to seek things to be thankful for rather than to seek things to complain about) is telling me that 1 year is a phenominally fast recovery. And of course, naturally a set back is to be expected and even looky-here, we caught things nice and early before I had too much of a regression, so I'm still sittin' pretty and doing well. True.
But my lazy, strictly reactive brain and feelings are so done. I am so sad and mad and frustrated that more time, more resources, more energy have to be spent. And here I was thinking I could host this grand 30th birthday for my husband at the end of the month (who so much deserves it). Now I get to talk to my boss about taking breaks and working less. And I get to drop a class again. And I get to spend a bunch of money again.
I really do feel like throwing a little hissy fit and just crying and stomping around. I did some of that today and it did seem to help. Plus, I guess I would rather be optimistic and happy than grumpy and upset. We'll see. Maybe I'll go back and forth for a few more hours today.
What a tease. 4 weeks of relative freedom from sickness. But, it ok. I would rather have had them than not.
Months of penicillin, here I come.
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