You Know You Have Multiple Sclerosis When… (or another one of THOSE days)

by Monique Liddle

You know you have multiple sclerosis when…

You know you have MS when

Since I decided to write a blog, I was afraid of days like today. This was why I wanted to have three posts ready prior to the website launch date. However, that didn’t happen due to various reasons, one of them being my health. The three weeks prior to the launch, I pushed my body to its limit; my body is now pushing back and giving me all sorts of symptoms to struggle with.  My second post this week was to be about why I decided to write a blog. I decided, instead, to write this post about my current flair-up of multiple sclerosis (MS) and trigeminal neuralgia (TN) symptoms that I have been struggling with since late Tuesday and have worsen since then.

The key thing to remember with my symptoms is that they are not the same 24 hours a day 7 days a week. Sometimes, I feel good for a couple of hours in the late morning and then the next minute I have an intense strike of my trigeminal neuralgia pain in my right eye – like a lightning bolt.  Other times, I feel a bit fatigued so I take a nap hoping to feel better, only to feel twice as worse when I fell asleep. MS is VERY unpredictable and unreliable. It creates havoc in my social life, and any type of work I do. I am learning to manage it better. It’s taken me years and I am still learning.  Next week, I’ll return to my original plan of discussing why I chose to write a blog and describing trigeminal neuralgia (TN).

Multiple Sclerosis

Both MS and TN are neurological disorders. In MS, the myelin sheath (which insulates the nerves protects communication travelling along the nerves) breaks down. Thus, when demyelination occurs, the myelin sheath breaks apart and messages travelling along the nerve are not properly delivered to the right place. For example, during a flair-up of my MS symptoms, my right leg does not lift as high as my left leg does; also it is painful to walk. With MS, there are a variety of symptoms, such as (but not limited to):

  • muscle weakness
  • fatigue (same as above)
  • pain                                                                                                                                       
  • heat/humidity sensitivity
  • depression
  • bladder dysfunction                                                                                                                                    

  from: http://www.healthline.com/health-slideshow/multiple-sclerosis#10

MS symptoms from healthline dot com

 

Today, my main MS symptoms are extreme weakness all over my body, fatigue, and pain in and trouble walking with my right leg. Defining MS weakness can be difficult. Try to imagine the last time you were really sick with the flu. Remember how weak your body was? You couldn’t really sit up, let alone stand. Moving around to go to the bathroom or get food was so hard to do. This is how I feel when I have MS weakness.

My MS fatigue usually occurs on a daily basis, but at varying degrees. Today, it was a “7.” My fatigue feels like I have to exert so much energy just to keep my eyes open, my body awake, and my mind moving. All I want to do is lay down and rest and sleep; this may be true even though I may have slept 9 hours that night. My thoughts are sluggish. It takes me so long to think – to compose even this seemingly straightforward post. It’s as if my body and mind are moving through sand; like my mind is moving through quicksand sometimes.

Trigeminal Neuralgia

Trigeminal neuralgia is also a neurological disorder (usually occurring on one side of the face). My TN is on my right side and feels as if there is a sudden shock-like, electrical pain in one or more of the three areas of my trigeminal nerve (get it “tri” meaning three. Smile  I know lame..but give me some leeway today):

  1. Forehead and eyes
  2. Cheek and the side of the nose
  3. Lips and jawline

from http://www.migravent.com/blog/tag/trigeminal-nerve/

branches-of-trigeminal-nerves-276x300 from Migravent

Today, my main TN pain is in my mouth/lips and along my right jawline. In addition to my TN pain, there is a side-effect of a TN surgery I had in 2006 that resulted in a constant feeling of pain and numbness called anesthesia dolorosa. We’ll discuss it more when I do my post next week on TN. For now, just know that it feels as if there is a persistent low level buzzing. Sometimes the buzzing and pain is more intense than others. Think of it as the static on a radio. When you turn up the volume, the static is louder (my static is more painful). When the volume of the static is lower, my pain is less. Well, today, my static is fairly bothersome – a 6 on a volume scale of 1 to 10. It is painful enough to limit my talking. This is one of the reasons why I started a blog: to reach out to other people through the web because I could not always keep in touch by speaking on the phone. I became active on Facebook, Twitter, online-chats, because speaking was becoming more difficult for me  

Why Tell You All Of This?

In this post, you got a peek into what are some of my “not-so-great days.” This is NOT a pity-party. I have lived with this at varying degrees for 12 years. I know that eventually the pain, weakness, fatigue, everything will go low enough on the intensity/volume dial that it will not stay in the foreground of my days.  Nothing stays the same. When I am in extraordinary pain, eventually the intensity will decline. When I am feeling good, eventually I will be in pain again. The “When?” and the “How Long?” are the unknowns and were scary for me for many years. This is true for anything in life. If we are having rough times with our spouse, eventually things will get a bit better. The when and how long from now are the difficult unknowns. I have to be patient, not add to my pain by getting emotionally upset and anxious, and I have to persevere. Please understand that I don’t do a great job of managing my MS and TN all the time. I cry. Feel weak. Lash out at loved ones, I feel down and get depressed at times. One of many things that keeps me going is that I have hope in that I know my situation will change, even if it’s in a small way. On my part, I have to work at patience, relaxing, ask for help with loving-kindness, and truly have hope in my heart. I have not always been able to do this. The main turning point was November 2011 when I chose to reach out to others more and not live inside my own head and think that what was happening to me was the worse thing in the world. Yes, it sucks. Oh, TN and MS are my enemies at times. I am sometimes jealous of healthy people. However, these emotions make me feel worse because they fill my heart, my soul with darkness. And darkness is heavy. My life is heavy enough with my illnesses, why should I add to it? This is where I have a choice on how to respond (rather than just react) to my MS and TN. I did not have a choice about getting them, but I still have a choice on how I want to be defined by them. But this takes time; it took me many years and I’m still working on it!

***Has there been a time in your life when you felt overwhelmed by situations, life events, or bends in the road that were confronting you. How did you face the situation(s)? (For example: Did you try to find some managing techniques, get help from friends or others, make it an enemy, etc.)***

I would love to hear your own stories and/or comments you have.  And if you have any questions – please don’t hesitate to contact me via the CONTACT Page, Facebook, Twitter, or by email at  monique@bendsintheroad.com

Please be sure to look at the Bends In The Road Facebook page for additional information about this post.

I’ve enjoyed sharing with you –

Monique

 

 

{ 35 comments… read them below or add one }

Mike April 7, 2012 at 2:21 am

The unpredictability of MS is so effective at messing with how you approach life. During bad phases, it makes you wonder if it’s always going to be like this from now on; and during good phases, you’re just waiting for the crud to hit the fan. It’s so difficult to describe this to people that don’t have to live with this, even with other MS patients – because everyone’s symptoms are different.
It’s still tough, but I also know that once you get to be my age (43), just about everyone has had Something Really Bad happen to them. So the way I see it, MS is just a part of life – something that makes me ME – and I’m a better person because of it.
Thanks for blogging, Monique – hope to read more in the future! :)

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Monique April 11, 2012 at 3:08 pm

Welcome Mike –
MS IS very unpredictable and that is why it’s hard to plan. Now I say to people, “I would love to be there, but it depends on how my body wants to cooperate. So, I’ll have to let you know more on the day of the event. Is that OK?” I understand that when you’re in a relapse or something similar, to wonder when will it ever end, or when things are going well – when will the other shoe drop – is quite understandable. I used to be like that all the time. But what I found is that I never was able to appreciate the times when I was doing well or even really happy. With a lot of help and meditation , I try to live in the moment I am in. If, I am in pain, I try to manage it the best I can, with movies, tv, computer/writing, or just sleeping. We can only do the best we can. Like you, I have come to see that MS is part of me and my life, but not everything (which is how I used to see it).

Because I am also in my early 40s, I have realized that many to most people, have had or are in a turning point in their life. The ones I wanted to discuss in this website ware the the bends in their roads that were externally forced upon their lives. I look forward to hearing more about your life stories and how you manage the many bends in your road.

Monique

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Jo Ann J. A. Jordan April 7, 2012 at 4:33 am

Monique,

I am very sorry you have these problems to deal with. You sound as if you have reached a point of acceptance, and with any debilitating condition that is an important step. I hope blogging will give you a medium to express yourself and ease your pain through contact with others.

I do not suffer with MS or TN, but I have Schizo-Affective Disorder and Chronic Fatigue Syndrome which can both, at times, wreck havoc in my life, so I understand a bit of the discomfort. Schizo-Affective Disorder can cause almost unbearable mental anguish in the form of hallucinations, mood fluctuations, and even psychosis. Thankfully my medication keeps most of that under control the majority of the time, but the shadow of possibility haunts my days. Chronic Fatigue Syndrome just makes me feel like lying down and giving up when it decides to strike. It is a kind of low grade malady at all times, zapping energy on even good days.

I have learned that reaching out through Social Media and blogging help me feel less isolated and inept in communicating. I have made some wonderful friends in the cyber world and they have helped me when I needed support. I hope maybe you will visit my blog at http://www.hopefuljo.wordpress.com and check out some of my posts.

I am very impressed by your honesty, courage, and writing skills. I will be coming back to visit your blog. Good luck on this adventure. May God bless you and help you every day.

Always,
Jo Ann

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Monique Liddle April 12, 2012 at 10:32 pm

Hi Jo Ann –
You have major bends in your life’s road that you struggle with. I commend you for reaching out to people via social media. Being isolated can have such a troubling effect. Over the past 6 years, I withdrew from my close friends and family for several reasons, including depression and difficulty speaking. Like you, blogging and social media have helped me to stay in touch with good people in my life and also to meet incredible new friends. In this way, social media is a great tool.

Thank you for revealing your struggles and how the affect your life. Both you S-A disorder and CFS disrupt lives in ways we cannpt imagine and do not want. It is apparent that you are a strong person who wants to live your life as best you can in spite of these disorders. It gets difficult at times, but do not give up. Reach out to people you can trust.
I haven’t been able to take a proper tour of your blog yet, but I hope to do so this coming week.

take care –
Monique

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liz April 7, 2012 at 8:43 am

Thank you for sharing ALL of it with us, Monique. Although I cannot imagine your pain, I can remember when the emotional pain of losing my husband was much like this…some days and hours and minutes were more painful than I thought I could bear, and it would pass…and then when I felt “good”, of course that would pass too. It went on for years (about 5) before I returned to a new normal, and after 14 years it can still give me a little stab from time to time…I admire your courage and your honesty. I sometimes feel a little jealous when I see couples my age living out their retirement years together. Reaching out to others, especially those with similar circumstances, is what I found to be most helpful. I am so glad you are able to reach out with your writing when talking or visiting are not an option. Sending you love and strength, Liz

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carol April 7, 2012 at 12:24 pm

Monique, Thanks for sharing.. And for the information about TN and MS. It is not often they people can read about it from inside the experience.
I think when we blog it is often a learning situation, for us and our readers.
Carol

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Monique April 11, 2012 at 3:26 pm

Carol –
This is very true. We can seek information on the web, but to find people who experience it and attempt to describe to their readers what it is like does not happen often. In your website, apainedlife.blogspot.com, you connect with your readers by telling them what it is like to have trigeminal neuralgia. A multiple sclerosis blog, Carole’s MS Blog, is another site, where people can read what it is like to have MS. I will try my best to let you, Carol and my readers, to know what I experience with MS, TN, and later diabetes. But remember, it’s not for pity; I do it to share. :)

Monique

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Marcy Kennedy April 7, 2012 at 3:42 pm

You did a wonderful job of describing how MS fatigue feels when you said it feels like when you’re really sick and everything is a struggle. I don’t have MS, but when you described it that way and I imagined how weak I felt with my recent sinus infection, I got a fresh look at what it must be like for you on a regular basis.

“The when and how long from now are the difficult unknowns.” So true in every struggle we face. When my husband lost his job unexpectedly before our wedding, this was the biggest struggle for us. How long would it be until he found a new job? It felt like if we could have known that, it would have been much easier to manage. But because we didn’t know, we learned lessons we otherwise would have missed.

Thank you for being so vulnerable and showing us what it’s like for you on a bad day.

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Clive Liddle April 8, 2012 at 12:47 pm

My dear Monique,
I am hugely impressed by your completion of this important undertaking. What comes through most strongly is your courage, honesty and your desire to handle the reality of your life – whatever it takes. You have done so with fortitude and perseverance. An example to us all.
I know that over the past 12 years you have struggled daily with a long succession of “Good Fridays” so I pray that you will be personally blessed with the experience of Easter Sunday.
I love you.
Your Uncle Clive
Oxford
U.K.

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Monique Liddle April 12, 2012 at 9:58 pm

Dear Clive –
I am so happy that you have come to my website and blog – I knew it would be something that you would understand. You know of my struggles for the last 12 years. I am in a much better place than I used to be. I’m still not quite where I want to be, but it is a journey of learning and reflecting.

We all have our struggles, or “Good Fridays” as you say. It is the way we walk that path that eventually defines us. Even though I wanted to give up many times, I did not. I have you, my family, extended family and close friends to thank for that. Everyone needs that support to help them through life, even though it is only I or you that walks that road. This is what I hope you and all my readers will understand.

I love you also. Thank you for being here at something important to me.

love –
Monique

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Bob Barcelona April 9, 2012 at 2:14 pm

Monique, thanks for sharing the blog – definitely keep writing! (do as I say and not as I do, given my failed attempts at blog discipline!)

Its quintessentially human to struggle to suffer with grace. I know I don’t suffer well. I need to work on that. I look forward to continue to reading your updates! Blog on!

Bob

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Monique Liddle April 12, 2012 at 10:40 pm

Hi Bob –
Thank you for your encouragement! I definitely need it as it is difficult with all the different components of keeping up with a blog and website. But I so enjoy it! The website and blogging allows me to reach people in very different ways had I been able to continue with my education and career in mental health.
These last 12 years, I traveled my road far from grace. At times, I wanted to give up so much, and other times I withdrew from friends and family. But somehow, through grace, the love of many people, and some persistence on my part, I have come a long way. But the road is not over. At least now, I have some idea of what it looks like.

Take care –
Monique

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Kristy K. James April 9, 2012 at 6:42 pm

Hi, Monique…
I had no idea that you struggled with these issues, and I’m so, so sorry that you do. Even just one would be more than enough for anyone, but that you’re stuck with all of it…

So many people deal with things that can’t hold a candle to this and are bitter and resentful. But I like that you have decided that it’s not going to define who you are. You do have to deal with it, but you’re doing so admirably!

Since I don’t know a whole lot about MS and TN, I can’t say that I know what you’re going through. But I can relate to degree. I still struggle with pain injuries received in an auto accident 3 1/2 years ago, and the overwhelming fatigue that goes hand-in-hand with hypothyroidism, which was diagnosed about a year ago.

Like you I chose to figure out a way to deal with each one. As for the injuries, a pain management specialist suggested three years ago that I just give up and use wheelchairs and motorized carts. Fortunately I had made up my mind that I would do whatever it took to ‘get my life back.’ I’m still wheelchair free and, while I walk a little slower than I did before the red-light runner nailed me, most people can’t tell there’s anything wrong. Even on days when the pain is really bad.

What I find the hardest to deal with, though, is the fatigue. I’ve found some things that actually help, and I’ll share what they are with you if you like, though I’m sure probably know about all of them. They’re seriously the only way I can get through my days with any degree of clear thinking.

I’m glad to have ‘met’ you, Monique. You’re quite an inspiration. :)

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Monique Liddle April 12, 2012 at 9:51 pm

Hi Kristy –
I hope that you will continue to reading the blog posts. You will soon understand more about MS and TN – especially in the next post. I will have a series of posts discussing the different aspects of TN and MS and how they affected my life and how I both reacted and responded. It took me 12 years to get to this point of where I can understand the place TN & MS have in my life without them completely defining me.
You, too, struggle with your own bend in your life road: hypothyroidism. It sounds as if you want to make the best of your life and not fall back and give up. Fatigue is a hard one to cope with. It impacts every aspect of your life and can impede you from enjoying it. This is where it is important to take it easy on yourself – and trust what is best for you.

I am glad to have met you as well. We all have the capacity to inspire! And you inspire people to not immediately give up because a doctor told you you so! :) :)

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Jenny Hansen April 10, 2012 at 2:24 am

Monique, I LOVE your new blog! I’ve been meaning to come over and tell you. Plus, you came roaring out of the gate with this post – congratulations!

I don’t think I got this many comments on a post for a few months. You are ROCKIN’ it, girl. :-)

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Monique April 10, 2012 at 2:50 am

Hi Jenny!
I’m sending you an enormous THANK YOU! Your praises mean so much to me because I enjoy your blog and the way your personality shines through your writing! I take a long time to write the posts, but I honestly am enjoying (and learning so much about) the process of writing. You, Marcy Kennedy, and Kristen Lamb have become by unofficial mentors as I have read your posts over the last several months! Thank you very much for your help. I will keep coming back to your blog for my continuing education! :)

Monique

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Jenny Hansen April 10, 2012 at 3:16 am

Come over to More Cowbell tomorrow – I have a surprise for you that will help your writing soar higher than you ever dreamed. (No this is not shameless pimping…there is a surprise for you at the bottom of tomorrow’s post!)

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Monique April 10, 2012 at 4:10 am

You have me quite curious, so I definitely will be there!

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Kelly April 10, 2012 at 6:03 am

Monique, you are one storng woman. Many would have a pity party facing just one of the conditions. You, faced with two, have reached out and are sharing your story. I am going to send your blog link to a friend of mine who also faces MS. I think your blog would be a wonderful thing for her and many others faced with conditions like yours. I think you are on a path to greatness, Monique! Keep at it!

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Andrew Hartmans April 10, 2012 at 7:24 am

Thanks for a very compelling description of your situation. I am so proud of you for having the courage to share your life with so many people. This will surely help someone and, hopefully, give you an outlet for your own processing. I look forward to reading, particularly about the spiritual aspects of your illness. Take good care, Andrew.

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Monique Liddle April 12, 2012 at 10:04 pm

Thank you Andrew for your encouragement – it helps me to continue on this path. I will be including posts that will describe my spiritual struggles during the past 12 years. Don’t worry. I have not forgotten what has shaped a rough road into who I am now. I look forward to your future questions and challenges – and also (maybe) a sharing of your own bends in your life’s road!?! :)

Monique

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Susan Craig April 25, 2012 at 9:05 pm

Monique,
Your blog is a wonderful way to share both your struggles and encouragement and hope. I will be watching it.

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Monique Liddle April 26, 2012 at 3:03 am

Susan –
Thank you so much. For that post, I had planned to write something else. But I was feeling poorly with my MS; so I thought why don’t I write about how I am feeling at this moment when it is very fresh in my body and mind. It took me a few days, but I hoped that I was able to communicate that my things I struggle with are MS and TN/ However, we all have at least one thing we struggle with in our lives. Struggling and trying to come to terms with that struggle is part of what makes us human.

I look forward to your comments in the future :)

Monique

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Tony May 6, 2012 at 10:06 pm

Hi Monique.

This is really interesting. I never thought of MS being correlated with depression… is that speculatively due to the result of having MS? …or is it due to some physiological connection? I am also curious, is there any relationship to Migraine headaches?

Thanks for doing these blogs. They are interesting and they also help people out there who are challenged with the battle of T.N. and M.S. Of course, your thoughts, writings, and ideas help all who simply live life.

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Lynn Franklin June 7, 2012 at 8:06 am

Monique, just found you on #myWANA twitter. Have you read Managing MS: Straight Talk from a Thirty-One-Year Survivor? It’s new and getting rave reviews. I read it to understand how a childhood friend handles this awful disease and found it really helpful. Link is here http://amzn.to/KilexZ

Reply

Monique Liddle July 1, 2012 at 8:42 pm

Hi Lynn –
I’m glad you found me. Thank you so much for the resource. I clicked on the link you supplied & the book looks helpful & informative. It’s in my Amazon basket, so hopefully, I will be able to purchase it soon. Stop by when you can!

Take care –
Monique

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Ranya January 9, 2013 at 7:33 am

Hi Monique,

Just wanted to say I hope u r feeling good today :) I’m not feeling so good, probably optic neuritis ( will get it checked out Tom) but I enjoyed ur blog…. Keep it going

Ranya

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Monique Liddle April 14, 2013 at 10:11 pm

Dear Ranya –
Thank you for your note. I am sad to hear you have optic neuritis as well. The good thing, though, is that it lessens over time and you can learn to cope with it. I am on a break now from my blog due to health issues increasing, but I plan to start back slowly in the summer. I look forward to hearing more from you.

Take care – Monique

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Penni Cotler March 2, 2013 at 11:32 am

Hi!
I’m so concerned that I may have MS. I have many symptoms. Numbness in both legs, the right leg being the worst of the two. I actually have to pick my leg up to get it where I want it. I can’t walk without help and my knees buckle so sometimes I fall and it is so difficult to pull myself up. It’s weird but I am not in pain. In the past week or so my vision is blurry as well. I also have a problem with my balance. My feet are swollen so shoes are not an option. I wear soft boots that are comfortable because they are flat and easy to get on. I have seen a neurologist. I had an MRI and he is sending me for another one to go up higher on the spine. He’s not saying it, but I think he suspects MS too. I am, or was! A very active person. I can’t work anymore, I can’t go out unless it’s to the doctor, and I am so dependent for a ride and help getting in and out of the car. Not to mention getting from one place to another in my house! I guess I’m fortunate that I’m not in pain, but I am distressed that I am unable to do anything! Thanks for letting me vent!!!!!!!
Penni

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Monique Liddle April 14, 2013 at 10:07 pm

Dear Penni,
I am so sorry that your body and thus your life is in such distress. My neurologist didn’t say anything at first. I think many don’t like to speculate because MS symptoms are similar to so many other disorders. I can relate to being absolutely dependent upon others to just get around. Showering/bathing takes up so much fatigue that at the end I am usually fatigued and in pain. So there are a few days I skip it and just do a quick sink bath. I found out that there is now a dry shampoo. I will buy some of that! Whatever to make my life easier so that I can function somewhat normally in other aspects in my life.

Please feel free to vent at anytime or email me through the contact page. I am on break from the blog because my health is worsening and other things. But I try to check imy blog/comments as much as I can, especially since I now know people are still commenting.

I’ll be thinking of you.
Monique

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Anita April 4, 2013 at 2:18 pm

Hi Thank you for your blog.
Could you possibly break up the writing so that people with vision issues can read it?

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Monique Liddle April 14, 2013 at 9:57 pm

Hello Anita –
Thank you for coming by to read my blog. I like getting to know new readers, even though I am on a break from my blog.
I am not quite sure what you mean by breaking up the writing. I know that on your computer, you can make the font larger. It depends on what kind of computer you have, but maybe ask for help from a friend who knows computer. I know when I can’t read something on the web, I go to the web browser’s settings and increase the font up to 200% or more.
I hope that helps.

Monique

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anonymous August 6, 2013 at 8:30 pm

I enjoyed reading your blog about trigeminal neuralgia. I have had so many pain issues in the last 3-4 years mainly pain or pins and needles pain in my legs (both but not at the same time) and back. I recently ( last year) began my facial pain that started out as a “toothache” that seemed to be relieved by relentless flossing. This changed over time with different episodes of pain that eventually lead to pain from my temple to my lower jaw where all my teeth had what felt like an electric bolt through them. I luckily found a walk in clinic with a pa that suggested trigeminal neuralgia and was put on carbamazepine. Interestingly this drug also eliminated my heel pain which makes it curious as to what the real cause of it is. I have never had my regular doctor suggest that I go see a neurologist for ms. I have no other symptoms of ms except that you seemed to describe the thinking process perfectly for me.
You mentioned that it was like you were moving through quicksand sometimes with your mind and body. Up until now I have been very frustrated with these pain issues and have never felt there was a reason as I don’t have any classic symptoms of ms but this seems to describe my thinking at times. When I need to recall things it feels like I am working so hard and reaching for things that will help my mind get to where I can recall what I really want. You quicksand analogy struck me as I read it as my mind seems to grasp for anything a stick or branch or something that can ignite my memory bank. Anyway I am as frustrated as ever as I still manage these symptoms as a mystery seemingly disconnected.

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