How to find help for Central Sensitization

Hi everyone!

I recently heard from a reader who was looking for some suggestions on where to turn next, in terms of finding a medical professional to help him.  He said he’d been struggling with central sensitization syndrome for three years now, and had yet to receive any significant help.

I thought his advice might be useful for many of you, so here’s what I said.

First, I recommended he watch this incredible video from Dr. Sletten of the Mayo Clinic, talking about the various causes and symptoms of CS.

Basically, this video is so awesome, I cried the first time I watched it.  Not, of course, because it was so awful, but because it made me feel validated in a way I truly wasn’t expecting.

In the video, Dr. Sletten explains how central sensitization impacts our body’s ability to process certain types of information.

In other words, it takes all of these normal, everyday bodily sensations that our nervous systems depend on in order for us to survive– and it turns the intensity WAY up.

On my blog, I have written about this the most in terms of pain.  You can feel a light touch on your skin, and have it be excruciatingly painful.  Your nervous system is magnifying the sensation.

But there are many other types of stimuli and sensations that our nervous systems can experience more intensely.  Noise, in my experience, can be a big one.  If someone’s making noise– say, doing construction on the building next door, it can really throw me off and ruin my entire day.   It’s like I just can’t block it out.

Heat, to me personally, is another one.  I’ve been thinking about that a LOT recently, as we’ve had a wave of 95 degree July weather here in Massachusetts.  It’s like… other people can sort of brush it off.  With me, it’s like it heats me up to my very core and I just can’t think clearly.  (Then I start to experience anxiety, which has been TONS of fun!).

So… back to our main topic.

This reader wanted to know if I had any suggestions for how he could look for help.  (He didn’t give me any specifics about his symptoms, or what exactly he’d already tried).  So here is my answer, written for a general audience.

It would be really great if you could find help in one place.

For example, the video from above is from the Mayo Clinic’s Pain Rehabilitation Center in Florida.  This type of a program, ideally, is geared towards helping people with complex pain problems.

If you have the option of attending such a program, I certainly recommend it!  However, this type of program is few and far between, and I’ll be honest with you– I think a lot of other pain clinics have a ways to go, despite how good they look on paper.  (You can read about my disappointing experience at a pain clinic here in Boston a few years ago).

So, while I certainly don’t want to discourage anyone from seeking out help where appropriate, I want this post to provide additional options for people for whom that isn’t an option (or it didn’t work).

What I personally did to manage my symptoms was to work with the appropriate specialist to address each set of symptoms I was experiencing.  Here are some examples, for symptoms that are common in people with CS:

Musculoskeletal Pain

The person who helped me the most with my chronic pain was actually a PT.  He truly changed my life.  He had advanced training in something called pain neurophysiology education, which taught me to view my pain as something that was there to protect me.

As a result, I learned to work with my nervous system, not against it.  I developed a much better sense for when it was okay to push through the pain, and when I really had no choice but to sit and rest.  PNE can’t take away all your pain, but it can help you learn how to work around it (which dramatically reduces the cycle of having setbacks).

There’s also a type of specialist called a physiatrist who specializes in musculoskeletal pain.  Physiatrists work in the specialty Physical Medicine and Rehabilitation.  Basically, they specialize in all of the ways to treat musculoskeletal pain, and they are trained to look at the whole person, rather than focusing in on one body part.

A physiatrist may ask you about your daily life, and how your sleep is.  They may offer you medications such as Lyrica or Cymbalta (see below).  They may also offer different types of injections, such as trigger point injections, to help with muscle tightness.  In general, they can help you think of solutions you may not have thought of.

Other, non-musculoskeletal symptoms

There are definitely other symptoms and conditions that can be caused by central sensitization.  Again, let’s remember that with CS, you’re taking what would have been a normal, helpful bodily sensation and making it extremely intense.

Digestive System

One type of sensation that can be intensified is in your digestive system– what’s commonly known as irritable bowel syndrome.

If you’re having these symptoms, it’s really important that you follow up with a gastroenterologist, to make sure there isn’t anything else going on that could be causing your symptoms.

It may be easy, for example, for your primary care doctor to tell you that it’s stress, or that it’s irritable bowel syndrome, but really, you want to talk to an expert, to make sure it isn’t anything else.

If your GI doctor doesn’t find anything else going on, then it’s time to look into solutions.  There are a wide range of treatment options out there for IBS– there are medications you can take, and you can work with a nutritionist to eliminate dietary triggers.  Stress, of course, is a bigger trigger and it’s important to learn how it affects you.  But keep in mind that it is not the only factor, which is why you should investigate all of your options.

Bladder

Another sensation that can be intensified is the sensation that your bladder is full.  This is one of the potential causes of a condition called interstitial cystitis, which many people with CS/fibromyalgia have.

However, there are other potential causes as well– an issue with the lining of the bladder, or a possible bacterial infection.

So again, it’s important to consult with a specialist (in this case, a urologist) to make sure you aren’t missing something bigger.

Headaches/Fatigue/Dizziness

These are also some common symptoms of CS/fibromyalgia.  However, like everything else, it’s really important to make sure that’s all it is, and there isn’t anything wonky going on in your nervous system.

Your primary doctor, of course, will be the one to direct you where to go in all of these cases, but just to give you an idea, these symptoms would probably be good to check out with a neurologist.

What you will likely find is that all of these specialties will be familiar with CS, as it relates to their own system of the body.

Each specialist may use slightly different terminology, or explain it to you in a different way.  A physiatrist will be talking to about pain.  A gastroenterologist will be talking to you about different types of sensations, as will a neurologist.

But ultimately, these are all different ways of looking at the same thing– the fact that your nervous system is processing information differently than it used to.

So… it isn’t really possible to get help for all of your symptoms from one person.  Because you need to get the information from a specialist.  

There is no one specialist you can see who’d be able to rule out other potential problems in your joints, in your digestive system, in your bladder, etc.  You have to go to someone with specialized knowledge, for each of these different types of symptoms.

So, in the end, I think the most important thing is that you have a supportive and thorough primary care doctor.

You will need this person on board to direct your care, write referrals, etc.

I have recently had an epiphany that there are probably better primary care doctors out there than the one I was seeing.

The woman who was my doctor for over 10 years didn’t really believe fibromyalgia was a real condition, so needless to say, she didn’t treat me for it.

Fortunately, that never stopped me from seeing all the specialists I needed to.  It’s not like my doctor was going to say no, and refuse to write me a referral if I said I was having a problem.

However, I am currently in the process of seeking out a new doctor, because our knowledge base is changing all the time.  And because, of course, I’d prefer to have a doctor who actually believes me!

But I know what it’s like to struggle for answers, and not know where to go for help.  

I wrote this post for you, if you’re in the same boat.   Hopefully I’ve given you a good idea of how you can work within the framework of the health care system to get help.

For more ideas, you can check out the following post.  It’s actually an old post, but I just went back and re-worked it before I answered this reader.  It has a little more detail on various treatments:

Don’t worry!  You can still get help, even if you can’t find a doctor who treats fibromyalgia!

Okay… that’s all I have to say for now!

Wow… this was a lengthy one!

As always, if you have any questions, you can leave a comment below or email me at sunlightinwinter12@gmail.com.

Thanks!

So, I think I *do* have fibromyalgia, after all.

Wow… the past few months have been full of changes for me!  There’s been a lot to deal with… but at the same time, I’ve been learning from it, and figuring a lot out.

I don’t always feel inspired to share super personal stuff on this blog, but I’ve heard from a few readers — including a few friends from real life, who decided to check out my blog– who reminded me that sharing these personal details can really help others.  So I feel moved to share some of my epiphanies with you all, for whoever may see this.

Epiphany #1.

This epiphany actually dates back to a conversation I had with another girl at my friend John’s birthday, a few months ago.  (This was before I ended up in the ER after a chiropractor visit, and subsequently fired my primary care doctor).

The girl I was speaking with, Jess, is a nurse at a primary care office.  We had never met before but she was just one of those really caring, empathetic people who’s easy to talk to.

I found myself opening up to her about my story– my health issues, chronic pain, the SI joint.

“Do you have fibromyalgia?” she asked me, stopping me in the middle of my story.

“Well, no,” I answered.  “Not really.  I have some of the symptoms, but no one’s ever really diagnosed me with it.”

She looked at me questioningly, so I continued.

“I mean, I don’t know, maybe I have it… I’ve just never really seen a doctor who seems to believe it’s a real thing.  My primary care doctor has always thought it’s in my head, and that I’m depressed.”

Now I really had her attention.

Her eyes widened and she said, “We see people in our office with fibromyalgia all the time.  It’s not an uncommon diagnosis.  Just because your doctor doesn’t believe it’s real, doesn’t mean you don’t have it.”

Somehow, Jess was about to put the entire past ten years of my life into a different perspective.

She continued, “You know, just because someone has a medical degree, it doesn’t make them the be-all, end-all authority.  They’re just people. You have to listen to yourself.  You deserve help.  Maybe there’s a better doctor out there for you.”

I was just honestly floored by this.

Jess started telling me how the doctor she worked for not only believed that fibromyalgia was a real diagnosis, but was willing (and confident) in treating patients with it herself.  Whereas my former PCP responded that it “had to be” a mental health issue, this doctor actually prescribed medication.  Not for depression or anxiety, but for fibromyalgia itself, as its own diagnosis.  And how this doctor believed her patients, and had sympathy for them and their struggles.

I couldn’t believe what I was hearing– it was like Jess was describing another world.

Since then, I’ve been reading more recent, up-to-date articles on fibromyalgia… and I think Jess is right.  

I think I do have it.

I’m not sure why I’ve always thought of my chronic pain issues as separate from fibromyalgia.  I think there’s a combination factors– the biggest of which, of course, is I’ve never met a medical professional who believed it was real.

I don’t know why this is.  I seemed to have bad luck, getting one doctor after another who believed chronic pain had to be linked to mental health.

I want to be clear about the fact that I have found significant relief through pain neurophysiology education, which I talk about on this blog. 

It’s a special form of physical therapy that teaches chronic pain patients how to work with their nervous system, rather than against it.  It’s an amazing way to reduce the cycle of chronic pain.  I can honestly say that my physical therapist Tim, who studied with pain researcher Neil Pearson, is the only medical professional who ever truly understood my pain issues.

But Jess made me realize that maybe I do deserve to have doctors treating me, who actually believe in me.  

You know what?  I still have pain.  (Pain neurophysiology education never promises to completely erase your symptoms– only to help you live with them).

The 95 degree heat we’ve been having here in Massachusetts knocks me out, seemingly more than other people.  And I have other symptoms associated with fibromyalgia, as well.  Maybe I do actually have it.

Maybe it’s a little bit ridiculous– and unnecessary– to go it alone.

Ultimately, I almost think it’s a lack of self-compassion that’s kept me from trying harder to find a doctor who believed in fibromyalgia.  Despite everything I knew intellectually about the science, on some level I had sort of internalized the idea that I was a “weird” case, or a “mental health case,” because that’s how my former primary doctor made me feel.

Looking back, I think I accepted the idea that there was no one who could help me, way too soon.

However, seeing how my former doctor reacted to my chiropractic scare really put things into perspective.

As I wrote about in this post, this experience helped me see her shortcomings a lot more clearly, compared to chronic pain.

When it was actually a question of my being paralyzed, or having damage to my reproductive organs, I saw how her inability to empathize, or actually acknowledge all of the symptoms I was presenting, actually had real world consequences.

So I switched doctors… and I’m so glad I did.

I’ll share more later about what I’ve been learning from my new doctor.  But for right now, I really wanted to address this fibromyalgia question.

Because I’ve been going back and reading recent articles online, and I’m changing my perspective.  

Fibromyalgia isn’t just one symptom of central sensitization… it is central sensitization.

The Mayo Clinic explains:

“Researchers believe repeated nerve stimulation causes the brains of people with fibromyalgia to change. This change involves an abnormal increase in levels of certain chemicals in the brain that signal pain (neurotransmitters). In addition, the brain’s pain receptors seem to develop a sort of memory of the pain and become more sensitive, meaning they can overreact to pain signals.”

Yes, that’s me.  That is what I have.  I don’t know why I didn’t see it before.

Going forward:

I’m going to do myself a favor, and see myself as someone who legitimately has fibromyalgia and deserves help.

I have written this so many times on my blog.   Believe in yourself, believe in yourself, believe in yourself.  It’s a lesson I’ve had to learn so many times over, and am still learning.   Unfortunately (or fortunately, depending on how you look at it), it’s a lesson life never seems to stop offering me opportunities to learn.

I’m not quite sure exactly what implications this has for my future treatment.  I do think that, despite my lack of diagnosis, I’ve still tried most of the treatments available to fibromyalgia patients.  (I’ve tried just about all of the medications, with no success).

But… who knows?  Maybe something else is out there for me.  And going through life answering “no” when people asked me if I had fibromyalgia was probably not going to help me find it.

So… that’s all for now.

I actually have a few other epiphanies coming up to share with you– it has been such an intense (but good!) time for me, learning wise.

Hope you stay tuned!

Related posts you may want to check out:

The story of my wrist, and the pot of boiling water (Finally, my own pain science metaphor!).

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Using metaphors to explain how pain works

One of the original reasons I started this blog was to get the word out about the various pain scientists and educators whose work has touched my life (including, but not limited to, Neil Pearson and Lorimer Moseley).

From them, I’ve learned that pain isn’t here to make us suffer (although it seems like it sometimes).  Ultimately, it’s here to keep us safe.

It’s a protective mechanism, and sometimes it can try a little too hard to keep us safe.  A sensitive nervous system is like an overactive alarm system, or an overprotective friend.

It can “zoom in” or “turn up the volume” on pain signals it thinks you need to pay more attention to.   This is what I call the “up” dial.

Your body can also turn down the volume on pain.

There may come a time when your nervous system decides it’s more important to “turn down the volume” on pain– or even block out pain signals completely.

Normally, this “down dial” isn’t something we are able to access consciously.  It’s something our body can do automatically, in times of great danger, if those pain signals are distracting us from getting out of a dangerous situation.

Neil Pearson, for example, tells the story of a patient he once treated who had been hit by a drunk driver on the way to work.  He woke up upside down in his burning car, and realized he had lost an arm in the accident.

The man managed to extricate himself from the car, collect his missing arm, and walk back up to the side of the highway all without feeling any pain.  This is because, in that moment, his body knew that feeling pain would take away from his chances of survival– the most important thing was his getting to safety.  Once he was safely in an ambulance in his way to the hospital, then the pain set in.

Your body has the ability to adjust the level of pain you perceive.

This is a survival mechanism that normally kicks in under emergency circumstances.

However, it is something we can also learn to do consciously with practice, using various techniques to tell our body to “turn down the volume” on pain.  That is the focus of pain neurophysiology education, the approach to pain management that changed my life.

My own metaphor

The really good news about this approach is that you don’t actually have to be a neuroscientist, or even have a huge scientific background, to learn how to do it.

Somehow, once you start to switch over from viewing pain as an enemy to a friend or a guardian, it can start to make an immediate difference in how you perceive it.

That’s why I’ve been so determined to spread the word about some of the metaphors that have helped me.  However, I’ve felt a bit limited in doing this, since I’m also interested in not plagiarizing other’s work.

So today at long last, I got my own metaphor. 

It’s not particularly wild or dramatic.  In fact, it’s pretty subtle (and also makes me not sound terribly coordinated).  However, I think it does a great job of explaining in a down-to-earth way exactly how the nervous system can choose to turn pain signals out, if it benefits your survival to do so.

It’s a small thing, really.  (And actually, it illustrates to you how absent-minded I can be at times, but that’s another matter!).

I was cooking dinner, boiling some ravioli.  They looked about done, and I was starving.  So, without really thinking, I lifted the pot off of the burner with one hand, and started taking it over to the sink to drain.

Halfway to the sink, I realized the pot was much heavier than I’d anticipated.  I realized I hadn’t really been paying attention, and it had been a mistake to pick it up.   Now I felt like my wrist was about to give out, and I was already halfway to the sink.

I quickly thought through my options.  I wanted to put it down instantly, but there wasn’t a clear space on the counter.  I wanted to put another hand up to steady the pot, but the handle was too small and I would have needed a potholder.

My wrist was really starting to hurt, and for a second I considered just dropping the pot altogether.

But no.  I had a vision of scalding water splashing everywhere, including on me, burning my skin.

And just like that– that very second– all the pain in my wrist disappeared.  Nope, my body said.  We are NOT dropping a pot of boiling water on ourselves today.  

My nervous system made an executive decision, in that instant, to block all the pain out.  Ultimately, the prospect of spilling boiling water all over myself was more of a threat to my survival than the pain in my wrist.

I was able to get the pot of water all the way over to the sink without incident.  About 30 seconds after I put it down, that’s when the pain came back.

Like Neil Pearson’s patient making it safely into an ambulance, my nervous system had blocked the pain out just long enough for me to safely put the pot of water down.  Once that was over, the pain came back, to remind me that indeed, I had put my wrist through something strenuous.

It’s been a few hours and my wrist is just a little bit sore.  I know it will go away– it wasn’t a permanent injury or anything.  I just strained it a little bit by trying to carry something it wasn’t strong enough for.  (This is a good reminder that I need to pay more attention in the kitchen, even if I am spaced out and hungry!).

But I wanted to share this with you because I think it provides a good example of how pain isn’t always a clear-cut indicator of what, exactly, is going on in our body. 

Instead, it represents our body’s “safety monitoring system,” warning us about potential threats to our survival, and making sure we choose the course of action that’s most likely to keep us safe.

Of course, if you have chronic pain day in and day out, it can be hard to see pain as a protective mechanism. 

I said it was a protective mechanism– I never said it always perfectly.

Sometimes in the case of chronic pain, the “up” dial can get stuck on.

That’s why, again, it is so important to know that your pain also has a “down” dial, and that, with practice, you can learn to access it.

I hope you found this post helpful!

For more on the metaphors which can help you understand pain, I recommend you check out my posts:

As well as:

That’s all for now!  

Any questions, leave a comment below or email me at sunlightinwinter12@gmail.com!

Pain is like Memory: Dr. Jay Joshi on Central Sensitization

Okay.  I’ve really been looking forward to publishing this post.

Here, we’re revisiting the same great talk by pain physician Dr. Jay Joshi.  In my last post, I outlined what Dr. Joshi says are the four main categories of pain.

Central sensitization is the type that is, unfortunately, the least understood.  And it’s also the type that’s had the biggest impact on my life to date.

What is it?

Central sensitization is a process through which the central nervous system learns to become more sensitive to, or amplify, pain signals.

I struggled with it for years and thought I was crazy, because I had pain that came and went throughout my own body that most of the doctors and physical therapists I saw couldn’t explain.

Central sensitization is a form of memory.

Generally, we think of central sensitization as a sort of a disorder, because of course, it causes so much pain and suffering.

However, as I’ve touched upon in previous posts, central sensitization actually has its roots in some of the same neural mechanisms that allow us to learn new things and store memories.  We “learn” from pain just as we learn from anything else, and our nervous systems can be changed by it.

As Dr. Joshi says:

“Central sensitization is what happens when the brain is exposed to certain experiences or certain memories.  It’s life… it’s being a human.

When you have a certain memory that forms it, becomes part of who you are… it becomes part of your experience.  And your behavior changes as a result of that.

This is not something that happens randomly…  This is something that happens to the neurophysiology of your brain.  It forms memories.  Those circuits get hardwired on your little ‘hard drive’ that’s known as a brain.  The same thing that happens with pain, when you have a chronic pain stimulus.”

The process of central sensitization is not separate from our brain’s other functions– rather, it belongs to them.

I found this happened to me so often, over the years, before I even knew what central sensitization was.

I’d have a painful experience– the first one was when I threw my back out at age 21— and it was like my nervous system was determined not to let me forget about it afterwards.

According to Dr. Joshi, this is exactly how central sensitization occurs, after a painful or traumatic event:

“You have a painful experience, and usually one of the first things that happens is your brain says ‘hey don’t do that again.'”

It’s trying to protect you from doing the same thing that might have caused you to become injured in the first place.

But what happens when that signal doesn’t stop? 

In cases like mine, this process can go on indefinitely.  Your brain keeps trying to protect you, telling you not to repeat certain activities, long past what’s actually necessary or conducive to your well-being.

This is called the wind-up phenomenon— when the brain’s protective mode stays on, and never gets the signal to turn “off” like it should.  Instead, it just keeps repeating the message of “don’t do that again”– even if it’s something that, technically, should be safe for you to do.

Once this process, the pain can sort of build on itself, like a snowball effect.  And you can remain in pain, long after the original injury that might have set all this off as healed.

Does all chronic pain cause central sensitization?

Dr. Joshi explains that chronic pain is likely to lead to some degree of central sensitization.  (This is significantly higher than other estimates I’ve heard, such as Dr. Elliot Krane’s figure of 10%).

However, I think Dr. Joshi’s explanation makes a lot of sense.  After all, when you experience chronic pain, you’re basically bombarding your nervous system with opportunities to practice sending pain signals.  Why wouldn’t it get better at doing so, the same way you can get better at playing the piano or riding a bike?

Central sensitization is still a part of my life.

I don’t expect to ever be able to totally reverse the process that first began, for me, at age 21.

However, I was able to make a lot of positive changes and gain back a lot of control over my body through pain neurophysiology education, which I write about a lot on this blog.  (Basically, it involves teaching your nervous system what it’s like to feel safe again, so that it can turn the “volume” back down on the pain).

There’s a lot more to say!

Dr. Joshi has some great thoughts on how to improve the medical profession’s understanding of central sensitization, as well as ketamine infusions– a potentially powerful treatment for patients with central sensitization.

I’ll be sharing more on this coming up– hope you liked this post!

The Four Categories of Pain– Dr. Jay Joshi

Hi everyone!

I’ve just discovered this awesome talk on central sensitization by pain management physician Dr. Jay Joshi.  It’s totally packed with information I want to share with you all– such as why it’s so hard to get help for central sensitization, and how ketamine infusion treatments can help.  There’s so much here, though, that I thought I’d break it down into bite-sized information for you.

So, to start out, let’s look at what Dr. Joshi says are the four main types of pain.  (For the purposes of this blog post, I’m actually jumping ahead to the 8:50 mark– later, we’ll come back to the beginning).  

The four types:

  1. Nociceptive
  2. Neuropathic
  3. Inflammatory
  4. Central Sensitization

1. Nociceptive pain: pain that results from actual tissue damage, or potential tissue damage (like if you’re starting to bend a joint past its normal range of motion).  It is “the common discomfort we have all experienced as a result of injury — a paper cut, a broken bone, or appendicitis, among other things.

More on nociceptive pain and its subtypes

2. Neuropathic pain: involves physical damage to the nerves or the central nervous system itself.  It can also occur when the person has a tumor that’s pressing upon a nerve.

3. Inflammatory Pain: Pain produced by the chemicals our body releases as part of the inflammatory or healing process.  On a small scale, think of how a bruise swells up and is painful to the touch.  This is because our body is sending special cells and chemical messengers to that part of our body in order to heal it– and also to make it painful, so that we know to protect the area.  This is inflammatory pain, and it can also happen on a much larger scale with more serious injuries.

4. Central Sensitization: And here we are– the type of pain that’s most affected my life.  It has to do with the concept of neuroplasticity: that the central nervous system (the brain and spinal cord) can change in response to the things it experiences.

When your body experiences a painful event or an injury, it learns from that experience, the same way it learns from anything.  Practice makes perfect– when your brain gets enough practice at sending pain signals, it gets better at it gets better at it.  In a way, this is for your protection– you learn and become more sensitive to performing the same kinds of actions or motions that may have caused this injury in the first place.

However, as a protective mechanism, central sensitization can sort of backfire.  Eventually, we can reach a point where our nervous systems are trying to protect us too much, when we’re not really at risk of injury anymore.

So these are the four main types.

Unfortunately for those of us suffering from central sensitization, it’s the type of pain that doctors and other medical professionals know the least about.

As Dr. Joshi explains, “there are physicians who claim to be pain physicians… who are anesthesiologists… who don’t even understand it.  And they’re teaching at major programs.  It’s scary.”

Central sensitization is as real a type of pain as any of the other three.  And, as Dr. Joshi says, if you’re going to be able to adequately treat pain as a doctor, you better be aware of all four categories.

***

Dr. Joshi also has some really great analogies which help to explain the phenomenon of central sensitization further.  I’ll be elaborating on some of those in my next post.

I hope this was helpful!

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Also: you may have noticed that I’ve been playing around with my blog’s format.  I’ve honestly never truly been happy with the appearance of my blog, because I find my options are so limited with premade WordPress themes.  I’m beginning to experiment a little (and even spend a little bit extra!) to try to get things right.  If you have any thoughts or suggestions how improve the appearance of my blog, please let me know!