CHAOSTOCOSMOS

Friday, 27 November 2009

u’z not doin well at dis game hooman

funny pictures of cats with captions
see moar Lolcats and funny pictures

As anyone who reads my Twitter updates already knows, I am not doing too well at anything lately, but here's another one ... Since my eyes will only let me read so much and my wrists will only let me type so much (if I can even sit up), I looked for other banal activities to keep me amused.

Clicking round blog and traffic exchanges, for no particular reason, soon gets incredibly boring and monotonous and, then the repetitive clicking gives me a burning arm and shoulder ache!

Then I found this Mini Pool game (well, playing this one really is more like pocket billiards, in it's most euphemistic sense, or it would be if I had the relevant parts). Once upon a time I could play the game proper. Now, I can't help thinking that, if I keep practicing, soon I shall be an expert.

Yeah, soon I'll be able to lose the little white ball down the hole with every stroke, such is the extent of the deterioration in my hand–eye coordination skills! Frustrated

Saturday, 14 November 2009

Compared to the normal ranges for my age, I'm dead ...

image After yet another "funny turn" the other week and because I'm still trying to decide if it would be wise (or not) to invest in a treadmill to get some regular walking exercise and, after reading Adrienne Dellwo's post on Oct 30th, Chronic Fatigue Syndrome, Exercise & the Heart, where the good doctor says, "Walk, live, but no exercise until you're at a 7, because if you exercise before that you're going to go backwards.", I thought I'd get myself a heart rate monitor.

While I was at it, I thought it may as well be able to monitor blood pressure as well as heart rate and, if there was anything untoward, the readings could be handy when next I was talking to my doctor.

So, for the last few days I've been collecting data:

Date Systolic Diastolic Pulse
11/11/09 106 60 56
12/11/09 100 62 50
13/11/09 93 63 54
14/11/09 109 60 78

According to the chart here, the minimum blood pressure for my age range should be 116/81, but as you can see, I don't come anywhere near the minimum in any of the readings.

Still, at least today I had a pulse! That, I think, may be because I didn't wait quite so long after getting up and doing something (bathroom / breakfast) than I had on the previous days.

None of these were taken right after sleeping or sitting for a lengthy period.)

My blood pressure was taken in the surgery when I registered with the doctor here in September 2008, at which time it gave a relatively high reading, 140/90. That surprised me, but, in retrospect, I think I would put it down to the pain and exhaustion of getting to the doctor's surgery, waiting, sitting uncomfortably, etc. I'm certainly not nervous in social situations, nor suffer white coat syndrome, so I doubt that contributed. That was the only time I've ever had a high reading, but I wanted to keep my eye on it, as my father had been treated for high blood pressure.

Back in the day when I was still a human being, my blood pressure was checked regularly when I was taking the contraceptive pill. (Birth control pills can increase the risk for high blood pressure, especially users who are older than 35, obese, and/or smoke - and I was any one or all of those at any one time.) Despite this, almost every time the reading would be on the relatively low side of ideal at 110/70. When home monitoring machines first became widely available about 15 years ago, I remember one of my neighbours having one and we were playing with it. I just happened to say that, usually, mine comes out at 110/70. She checked it and we laughed, because it was 110/70.

Given the circumstances, I was more than happy with that level.

Of course, I'm older now and, although my weight has gone up, I no longer take the contraceptive pill (haven't had a need for them for more than 12 years) and I gave up smoking. And, having eliminated those, my *normal* blood pressure does seem to have dropped even further.

It's just not normal for my age.

And while I know this is good news and does not indicate anything immediately life-threatening, I do think it begins to explain many of my symptoms. As these have been shown to be linked with ME/CFS, the readings also go towards, once again, confirming that diagnosis: 

 Comparison of heart rate variability in patients with chronic fatigue syndrome and controls: "Recent studies have reported a close association between chronic fatigue syndrome and neurally mediated hypotension. We hypothesized that this association may result from an abnormality in autonomic function among patients with chronic fatigue syndrome, which may be detectable using an analysis of heart rate variability." (My emphasis.)

Again, I can claim all of the Neurally Mediated Hypotension symptoms listed here.

NMH, it says here, typically occurs in susceptible individuals in the following situations:

  • after prolonged periods of quiet upright posture (such as standing in a queue, standing in a shower, or even sitting for long periods),
  • after being in a warm environment (such as in hot summer weather, a hot crowded room, a hot shower/ bath),
  • immediately after exercise
  • after emotionally stressful events
  • after eating, when blood flow has shifted to the gut during the process of digestion.

Again, tick "all of the above." (See also Orthostatic intolerance.)

Although I can stay on my feet for longer if I keep moving, as in walking, the longest I can stand still without starting to feel nauseated, lightheaded, weak in the limbs and an overwhelming need to sit down is now certainly less than 10 seconds. Of course, I often have to maintain it longer than that, which means I often feel very ill indeed. Hence, I avoid having to wait at bus stops where there is nowhere to sit, I no longer cook things that require me to stand and stir them and for the 3 minutes that my porridge takes in the microwave each morning, I have to go and sit down.

This has got worse over the years and, most markedly with the increase in all of my symptoms over the last year of so, but I can definitely trace the symptoms of orthostatic intolerance back to when I had Glandular Fever (mono) when I was 16. This was shortly before I left school in 1973 and when I left school that summer, I went to work as a window dresser in a shop. The only problem was that they also wanted me to serve in the shop in the afternoons and I simply could NOT stand because of these symptoms, so I left after 3 weeks and took jobs sitting in offices.

Until we had a power shower fitted that allows me to shower in a sufficiently short time, I couldn't risk showering unless it was unavoidable, because it took so long with the low water pressure that I was having trouble balancing and staying upright long enough. I had to take a shower before I could go out, but once I'd had a shower, I was in no fit state to leave the house. I wont go into the insults, crap and arguments it took to get this - it took a year - but be assured that it was not installed just to "make her happy," (her meaning me) as my mother told one of her believers. It was a medical necessity - so much so, I was on the brink of calling in Social Services and a lawyer.

This year has proven, once again, that the combination of humidity and warm temperatures is something my body cannot tolerate. In the UK, I'm not warm until 21C, but I become intolerably overheated and begin to get these symptoms when the temperature reaches 23C. Whereas, in the drier heat in the Canaries, I could tolerate up to 35C before my brain melted.

Pulse rate: say Saga, "The average resting heart rate for an adult is between 60 and 100 beats per minute, while well-conditioned athletes can achieve between 40 and 60 beats per minute.", they add, "Generally the lower it is, the fitter you are - unless you have a pacemaker or heart disease." Which means either I'm super-fit (NOT) or, "Houston, we have a problem!"

Bradycardia (Greek βραδυκαρδία, bradykardía, "heart slowness"), as applied to adult medicine, is defined as a resting heart rate of under 60 beats per minute, though it is seldom symptomatic until the rate drops below 50 beat/min.

Trained athletes or young healthy individuals may also have a slow resting heart rate (e.g. professional cyclist Miguel Indurain had a resting heart rate of 28 beats per minute). Resting bradycardia is often considered normal if the individual has no other symptoms such as fatigue, weakness, dizziness, lightheadedness, fainting, chest discomfort, palpitations or shortness of breath associated with it.

Well, I'm certainly not a trained athlete nor a young healthy individual and yes, I do get almost all of the symptoms listed there. I don't usually outright faint, but everything but. I wish I did actually, because staying conscious to suffer all the other symptoms and feeling as unwell as it makes me feel is no damn party. Actually, it's unbearable and very frightening.

I've checked my readings again today and confirmed that just a walk to the kitchen and back, approximately half a dozen yards, each way, on the flat (and not exerting myself there), raises my heart rate by at least 20 bpm. What I need to check next is what effect a greater level of exertion - that *impossible yet unavoidable* one mile walk, for instance - has on my heart rate.

It would not be beyond the bounds of the imagination to expect this to raise it by at least another 10 points. Then we may be looking at Postural orthostatic tachycardia syndrome (often referred to as just postural tachycardia syndrome or POTS), which often co-habits with ME/CFS, the hallmark symptom of which "is an increase in heart rate from the supine to upright position of more than 30 beats per minute or to a heart rate greater than 120 beats per minute within 10 minutes of head-up tilt." And this often comes with a wide variety of symptoms associated with hypotension (low blood pressure), all of which (bar the actual fainting), I suffer all of the time.

This article on Pacing by Numbers: using your heart rate to stay inside the energy envelope, suggests that monitoring has several benefits. Has to be worth doing.

And, whilst I don't fancy any of the drug treatments that might be prescribed to treat this, I can increase my fluid (not by much, I already manage my 8 glasses per day) and salt intake.

Actually, because salt is generally touted as bad, I have tended to avoid it like the plague. Because of this, I don't eat processed foods, I don't use salt in cooking, I even avoid stock cubes because they can contain a lot of salt. The only time I add salt to food on the plate is on a salad. Perhaps I should treat myself to the biggest tin of salted peanuts I can find and stuff myself silly! :)

All that said, there is still a massive problem. I think I should discuss this with my GP, so we can eliminate any other problems, but assuming I'm right in my self-diagnosis (I don't claim any ability, but I have been proven right enough times already about it), this is precisely the sort of problem that leads you to get sectioned or to die from ME in the UK. It may be better to keep quiet!

Hobson's Prescription Choice

prescription_choice

Q: When is a choice not a choice?

A: When it's offered on the repeat prescription order form at my doctor's website.

My doctor's surgery is over a mile away, as are all of the pharmacies listed. There are very few busses that pass any of them, so generally, I have to walk there. As one outing per week is the absolute maximum I can manage - and that will cost me 5 days recovering and one resting before I am able to tackle the next - I plan carefully to maximise what I do on any one outing.

As I couldn't go out twice in one week - oh, I have tried and the resultant crash and pain was unbelievably severe and unbearable - I'll order my prescription a week (they only want 48 hours notice) in advance of whenever my next outing is, so I can pick it up while passing.

(And I'm sufficiently organized that I get my Google calendar to send me emails to remind me when to order another repeat prescription and when and where to pick it up.)

Last time I had an appointment at a hospital that I needed to get to by train, so I chose the chemist that I would pass on the way to the station and had the prescription sent there. All I had to do was walk in, tell them my name and collect it, no waiting around. Brilliant!

So far, so wonderful, eh? Not so fast!

This time, however, because the weather is too bad for me to venture out and I haven't been feeling well enough anyway, I ordered my prescription with my customary week's grace, only this time I elected to have it sent to the chemist further down the main street, a couple of doors down from the charity shop where my mother works, so she could pop in and collect it for me.

If I had been able to go out myself, that was the day of the meeting of my pain group and this second chemist was also the nearest to there for me to have been able to pick it up myself on my way to the meeting. If I'd had to collect the prescription from the surgery or the previous chemist, I'd have had to walk right across town, as well as, potentially, the mile and a bit to get there. If I'd had some other appointment or my mother had been going shopping elsewhere, another of the chemists may have been more suitable and I don't think it wholly unreasonable to be able choose the one that is most convenient each time, depending on the particular circumstances.

The surgery website - as you see from the screengrab above - offers a drop-down list of chemists. It looks like patients have a choice, drop-down lists on internet forms are meant to offer choices, so I attempted to avail myself of it, for reasons that I feel make perfect sense.

On Thursday, mother tried to collect the prescription, but the relevant chemist had nothing for me.

I phoned them to double check, quoting the date I'd ordered it and they confirmed that had nothing on their computer either. So I phoned the surgery to ask them to track it.

After a bit of going round in circles, checking to see if maybe it had gone to the first chemist and not the second and without actually admitting what had happened, she finally said that they had the prescription in the surgery and I would have to pick it up from there. In other words, they'd "decided" not to send the prescription to the chemist I'd chosen, but didn't let me know.

Collecting it from the surgery isn't ideal and is something I try to avoid, unless I'm actually going to see the doctor there, because that means waiting around twice. There's usually a long queue in the surgery to collect the prescription, then another in the chemist for 20 - 30 minutes for the drugs to be dispensed. If there is a chair free in there it's a miracle, but even if there is, it causes me great pain to sit for the length of time required. There is no way I can stand in line.

Of course I told the receptionist why I had chosen the chemist I had, but the upshot is that - despite the appearance of a choice being offered - you can't swap and change chemist, because that would be "too confusing", she says. I fail to see why. For whom exactly? Not to me, it isn't.

And that's it - she's going to leave it set for me to collect from the surgery in future.

Not having these choices is going to cause me lots of inconvenience, plus additional pain and exhaustion every time I have to wait around or go to a location I wasn't already passing.

Yes, I should have realized it would be a total misconception to assume that the National Health Service was in any way supposed to provide a service to the patient! / Rant over.

Hobson's choice

Thursday, 12 November 2009

Fibromyalgia Symptom Checklist

image

(Ed note: Here's a "cut out and keep" list that may help you, say, next time you want to remember symptoms to discuss with your doctor.)

It's hard to predict what the symptoms of a given case of fibromyalgia (FM) will be, because they can manifest themselves in very different ways in different people. In this article you will find a list of the most common symptoms. By using this checklist and placing a mark next to the different symptoms which describe the way you feel, you'll give yourself a starting place to use when discussing the possibility that this is what you have with your doctor.

_____ 1. Pain in the soft, fibrous tissues of the body - the muscles, tendons, and ligaments. FM pain can be described as aching deep within muscles, shooting, throbbing, intense burning, or stabbing.

_____ 2. Pain and stiffness are worse in the morning.

_____ 3. Physically-draining fatigue. Patients often feel as if heavy weights are tied to their extremities. May find it difficult to get through a day's activities.

_____ 4. Difficulty concentrating. Inability to focus on specific tasks.

_____ 5. Unable to retain new information to the point where it interferes with the ability to deal with mental tasks, such as on the job.

_____ 6. Insomnia. Difficulty falling asleep and staying asleep. Frequent periods of waking through-out the night and indications of wakeful brain activity. Waking without feeling refreshed.

_____ 7. Abdominal pain, diarrhoea, constipation, nausea, and bloating.

_____ 8. Inability to exercise, even moderately.

_____ 9. Severe headaches which recur two or more times per week. Can be migraines or tension headaches.

_____ 10. Chest pains other than cardiac pain.

_____ 11. Irregular heartbeat.

_____ 12. Nasal congestion.

_____ 13. Shortness of breath.

_____ 14. Pain in the ligaments and muscles of the jaw.

_____ 15. Painful periods.

_____ 16. Acid reflux.

_____ 17. Blurred vision.

_____ 18. Profuse sweating

_____ 19. Dizziness

_____ 20. Muscle weakness and balance issues.

As you can see, there can be a lot of clues pointing to FM, but they are symptoms that many people just live with every day instead of having them checked out. If you found yourself honestly checking several of the symptoms listed above, take your list to your doctor and find out if she thinks you should have more thorough testing done. Although there is no cure for fibromyalgia, there are a lot of things you will be able to do to lessen its effects on your body and your lifestyle.

Paul Julian writes about Fibromyalgia and Chronic Fatigue issues at http://www.squidoo.com/GetFibromyalgiaHelp

Wednesday, 11 November 2009

My new favourite spot

During the day he still spends his time permanently burrowed under the bedcovers, but this is where Balu now parks his floofy arse for the couple of hours between dinner and supper [1] - in other words, as close as he can get to me, just to make sure I don't forget his food.

It's worth mentioning that this multi-cushion cat-platform on my bed is now the only means by which I can manage to sit up for any length of time and even then, not for many hours. My back and neck become too painful within 10 minutes if I don't support them and I already often have to use an additional cushion in the small of my back, a lumbar support belt and a neck cushion too.

Bed is where I spend almost all my time now, not because I want to - nor as my mother *so kindly* told the neighbours, because I "lay around" - but because the alternatives are too painful.

That doesn't mean I'm not still in pain, because I am, constantly, even having made myself as comfortable as possible. Hell, it even hurts me to move to adjust the bloody cushions!

I can no longer even sit up in a chair, because literally within seconds of doing so, I get pains in my lower legs - quite severe - ankles and feet and my ankles swell. When that happens, guess what? I'm advised to keep my feet up, so it seems to make more sense to me to prevent it from happening (and prevent any other damage or complications) in the first place.

All this "laying around" in bed might seem like a wonderful life, if you were a cat.

 

image [1] That is, when the munchkins aren't diving up and down the hallway and in and out of their Cat Play Fun Crinkle Tunnel. I wasn't at all sure about purple camouflage, but the cats don't seem to mind that and I mention it only because I wasn't expecting already 8 year old cats who really aren't used to toys to be at all interested, but I decided to take the chance. (They had a whole valley full of open space, rabbits, birds, lizards and more in Tenerife, what did they need with toys?) Games start as soon as I get this out and the frequent crinkling sounds suggest that they like it. Money well spent.

Tuesday, 10 November 2009

Compulsory Viewing

I've already put these two videos into the blog's sidebar so that future visitors can find them easily, but I really do think that as many people as possible need to watch them and become a little better informed. They are beautifully written and presented, as well as being true and profoundly disturbing in the way they highlight the cruelty and injustice shown to ME patients in the UK.

Incidentally, I've read in various places recently that some people in the US think that CFS is still called ME in the UK. It isn't: the UK has also adopted this stupid and demeaning "Chronic Fatigue Syndrome" label too now and, in fact - as well as fibromyalgia - that is what it is called on the letter from my rheumatologist with my diagnosis. Despite this, I use myalgic encephalomyelitis (ME) when I refer to my own illness, mainly because I can clearly pinpoint viral causes and / or catalysts for my illness and I certainly meet all the symptom criteria for the Canadian Expert Consensus Panel Clinical Case Definition for ME/CFS. My doctors were initially even reluctant to apply the term fibromyalgia - as they now appear to consider this all one and the same [imaginary?] thing - but I pushed my case for the distinctions between the two and why I "qualify" for both.

Via: WAMCARE blog

Sleep Through the Night Without Joints Pain

image Do you have trouble sleeping at night due to joints pain? You are not alone. Many people just chalk this up to the aging process and let the process continue its journey through their bodies. We now know that there are things that can be done about this joints pain. You don't have to just accept it like your grandparents did. You can start combating this problem by taking a daily supplement that will support your aging joints with added glucosamine compounds, chondroitin sulfate and MSM just to name a few. These substances are necessary for the proper functioning of our joints. As we age, we loss some of these things. They simply have to be replaced.

By replacing some of the missing or low level substances you will be able to fall asleep and get a better night's sleep and get up in the morning feeling more rested and refreshed. You should get daily exercise even if it is simply taking a 45 minute walk. Exercising will help you keep joints pain from returning later on. You will also get the added benefit of feeling better. The exercise will help your brain produce the feel good enzymes to raise your mood and help you feel positive about life.

If you don't do these things and instead remain more dormant, your joints pain will continue to get worse until you will not be able to move at all. This is why so many older people can only get around using a wheel chair and someone else to get them around. You don't have to accept this as your future.

Start taking joint supplements and exercising so that you can remain independent for the rest of your life. This is something that is within your control.

James Falcon is a joints pain specialist and the director of the popular website JointPainTreatmentInfo.com. He provides honest information and recommendations on matters like joint pain management and much more. For FREE tips on joint pain relief, check out the website today!

[NB: I also note that, "Many fibromyalgia sufferers report that glucosamine and chondroitin supplements help to relieve some of their fibromyalgia symptoms." Worth a try?]

Monday, 9 November 2009

Oh look, the perfect t-shirt ...

image

... for Twitter fans who suffer from IBS-C (constipation-predominant irritable bowel syndrome!)

Yes, such things really are newsworthy events to us, although, sometimes we do actually do slightly more interesting things.

Really! smile_nerd

(T-shirt is available for purchase here.)

Sunday, 8 November 2009

Hip Bone Pain

image To understand some of the possible causes of hip bone pain it's important to understand how the hip bone is constructed. The thigh bone (femur) leads the to the pelvis and at the very end the bone is shaped like a ball. The pelvis has a recessed area (socket) that accommodates the ball on the femur. Hence, the term ball and socket joint. This ball and socket arrangement allows the joint a great deal of flexibility and is protected against dislocation by a combination of extremely strong ligaments and layers of muscle surrounding the joint.

Causes of hip bone pain

  • The ball part of the femur is significantly narrower than the rest of the bone, which means that it is a point of failure. When you hear about people breaking a hip, it is typically this part of the bone that has broken. Obviously, a broken bone is a significant cause of pain.
  • The ball of the joint is surrounded by layers of muscle that protect it. Unfortunately, this leads to a problem with blood supply. The ball has a single small artery that supplies it, if for some reason this actually becomes blocked the ball will start to decay.
  • Gout, although this typically affects the toes and ankle joints it can also impact the hips.
  • Infection, the bursa (membranes that surround the joint) can become infected (bursitis)
  • Rheumatoid arthritis can also target the hips and specifically injure the joint.

Hip bone pain is commonly felt in other parts of the body. It can be felt down the legs above the knees or even in the groin. This can make it politically difficult to diagnose especially as the joint is located deep beneath the muscles surrounding the thigh and pelvis making it difficult to examine manually.

At the first sign of pain, there are a few things you can do to prevent the situation worsening. Stop doing the activity that causes the pain, use a cane or crutches to relieve the stress on the joint, and make sure to sleep in a firm bed in a position that does not cause you pain. Once the pain is decreased, you can start with some gentle exercising and stretching; start slowly, go easy on yourself and will listen to your body and pain messages it is sending you.

By Andrew Ainsworth. Andy is an Engineer, serial entrepreneur, marketing guru and family man.
Hip Bone Pain, Hip Joint Pain, Article Source

Friday, 6 November 2009

6 Ways to Beat Brain Fog Caused by Adrenal Fatigue

image

Low stamina, poor digestion, slow to recover from injury or illness, non-refreshing sleep, and extreme sensitivity to cold are just some of the symptoms that people with adrenal fatigue experience.

When we often find ourselves under stress, our adrenal glands stop working properly and don't produce enough of the necessary hormones needed to constantly release a healthy dose of energy - resulting in us feeling tired and exhausted.

If you are mentally in a constant fog, constantly feel tired, or have a tough time focusing, you could be suffering from what is generally referred to as adrenal fatigue. Here are six ways to help decrease brain fog caused by the disorder:

1. Take in 'well-spaced' meals. If you tend to skip meals, then you ought to know that you are doing more harm than good for your body. This is especially true when talking about breakfast; not taking it is a surefire way to gain - not lose - weight. For most people with adrenal fatigue, they should eat closer to 5-6 meals a day as opposed to 3.

When you're hungry, your blood sugar drops, making you feel light-headed and tired. You would also notice that this is when you have short attention span and inability to focus on what you're doing. Have a good breakfast and follow it up with well-spaced meals. This will help sustain your energy throughout the day.

2. Stock up on protein. Hand in hand with the frequency of your meals is the kind of food that you actually take in. Make sure to eat those that are rich in protein; they will help boost your energy and keep you focused. On the other hand, it's a good idea for you to do away with junk foods and those that have a lot of sugar.

3. No to caffeine. You should keep in mind that coffee doesn't make you energized; it just gives you an illusion of boosting your energy. In reality, caffeine actually deprives you of B vitamins - decreasing your energy and making you feel even more tired. More caffeine doesn't not help with brain fog or adrenal fatigue, it makes it worse.

4. Do relaxing exercises. Instead of rigorous exercises like aerobics, opt for those that will stimulate the body but will also be relaxing. You can try yoga, deep breathing, meditation, or even something as simple as walking and stretching regularly.

5. Avoid alcohol and tobacco. Even if you don't have adrenal fatigue, you should smoke and drink in moderation - but even more so if you are experiencing this disorder. Alcohol and tobacco make your glands function even badly, so don't make your body grow weaker by drinking and smoking.

6. Reduce stress. We all experience stress every day, but try to reduce it by learning to relax. Try going for short walks or taking breathers every few hours.

About the Author

Gerry Geneva is a personal energy coach and expert. He specializes in beating adrenal fatigue through energy management techniques, proper nutrition and adrenal fatigue supplements.

Thursday, 5 November 2009

Remember, Remember ...

image... the fifth of November.

Silly me, I forgot again - 'til I heard the bangs. Just not used to these "quaint British customs"! smile_eyeroll

Mostly because I don't want to get used to them.

Given the popularity (NOT) of thieving politicians these days, doesn't it seem a a bit contrary for sheeple to still be celebrating the saving of the Houses of Parliament? Just thinking out loud.

Monday, 2 November 2009

A Prayer for the Stressed

image

Grant me the serenity to accept the things I cannot change, the courage to change the things I cannot accept and the wisdom to hide the bodies of those I had to kill today because they got on my nerves.

Help me to be careful of the toes I step on as these may be connected to the feet I have to kiss tomorrow.

And help me to remember – when I am having a bad day and it seems that people are trying to wind me up – it takes 42 muscles to frown, 28 to smile and only 4 to extend my arm and smack someone in the mouth.

- Amen

Committed to what's left of my memory, thanks to Colin Davis

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