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Christmas tree in Bad Kissingen (2008)

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The Christmas tree is trimmed…. Snow is on the ground…. The presents are wrapped (well most of them anyhow)… The Champagne and OJ are in the fridge…

And the Spirit of Christmas is beginning to fill my home…

My little dude is losing sleep over what EXACTLY is under the tree this year.  He keeps asking for clues, trying to get me to slip up and tell him “just one thing”.  He is wanting to open the Christmas crackers, and he wants to know if he is REALLY GOOD, can he open just ONE present on Christmas Eve…

His frenetic energy is tangible, I feel it in my gut, and I get goose bumps just thinking about watching him on Christmas Morn. THAT is my gift each and every year – Being able to experience the wonderment of the season through his eyes is the biggest present I could receive, wrapped up in love with a bow on the top.

My usual Christmas wish is for my son, and my family to have a holiday filled with joy, love, yummy food, and smiles… and each year I am never disappointed… each year my wish is granted.  What more could I ask for?

THIS YEAR my Christmas wish is a little different…. It is my wish for ALL of you, family included….

I wish for you to have ‘enough’… not excess, not too little, but just ‘enough’.

Enough hope to get you through the hard days…

Enough love to fill your heart…

Enough wisdom to help others…

Enough clarity to understand the difference you make in the lives of others…

Enough healing to restore quality of life…

Enough friendship to never feel alone…

Enough understanding to never judge…

Enough silence to reflect on blessings…

Enough patience to be gentle with yourself…

This holiday season I wish for all of you to have ‘Enough’.

 

Merry Christmas to all of my Graceful Agony family.  I will be carrying you all in my heart over this holiday season.

And thank you for the gifts you give to me each and every day.

 

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It is easy to get lost on the MS. Oosterdam if you aren’t paying attention… I honestly don’t know how people find their way around the HUGE Superships that are 4 times the size of our ship!

We made our way to the 4th Floor – The Upper Promenade Deck, and very happily found our cabins… 3 in a row on the Starboard side of the ship.

If you have ever been on a cruise ship, you’ll know that the cabins are cozy… There are 2 beds convertible to a queen-size bed, bath & shower, sitting area which has a hide-a-bed couch, private verandah, floor-to-ceiling windows.Approximately 254 square feet including verandah.  They aren’t huge by any means, but if they are organized correctly, they make a comfortable home away from home.

I had to share the next picture because it makes me LAUGH every time I see it!  This is Tim standing in the shower in the our bathroom.  When I say ‘cozy’, by my 5’3 standards it truly is.  For Tim, who is over a foot taller than I am, ‘cozy’ takes on a whole new meaning!  LOL!

 

Our luggage wasn’t in our cabin when we first arrived, but within minutes there was a knock on the door, and our suitcases showed up, one by one.  We buzzed about the 3 cabins, comparing them, and the boys went out on the balcony to sit in the sun while I started unpacking and organizing the closets…

I couldn’t WAIT to show Tim the rest of the ship, and explore every nook and cranny!  But before that, we had to take part in the Muster Drill.  It is a safety drill that by law you have to participate in at the beginning of every cruise.   We went and found our Lifeboat, #11, and then we were off and running!

Michelle, our wonderful travel agent, surprised us with a few extra goodies, including a special dinner to start off our cruise, in the Pinnacle Grill.  On a cruise you have different options for eating meals.  If you want a casual eat-anytime meal, you can go to the Lido deck and eat at the buffet, you can also eat in the dining room for more formal service, but the cream of the crop is the private restaurant known as The Pinnacle.  I REALLY wanted to experience eating there, so I was both pleasantly surprised AND excited that we would be eating our FIRST dinner there…. We cleaned ourselves up, went on deck to see the ship pull away from the terminal….

 

Bon Voyage!!

And then we headed down for dinner….

The Pinnacle is only something you can describe as opulent…. It has over-the-top decor, but it isn’t ‘tacky’.  It is very well done, down to the silver chairs and the artwork, it is something that would be considered ostentatious anywhere else…I thought it was beautiful.

I soon realized that I had NO self-control after looking at the Menu… It all sounded SO yummy!  It was so hard to decide!!

I started with an Amuse Bouche, a tasty morsel to wake up my taste buds!  It was a sea scallop with a pumpkin puree… unusual, but really good!! Next I had the lobster bisque… and I thought I had died and gone to heaven… it was SOOOOO good!  Tim agreed, as he ordered that too, but my little dude enjoyed a Prawn Cocktail, and the prawns were as big as my fist!!

 

Tim and I thought we would pace ourselves and SHARE an order of crab cakes, but we a bite in we wished we had ordered them for each of us.. they were decadent with a crispy panko breading, with sweet and rich crab inside, they were perfect!  Oh how I wish I was still on the ship… 😉

For dinner I had the “Land and Sea” – or in other words Steak and Shrimp.  I choose the creamed spinach and rice for my sides, but I had to try my sister’s Lobster Mac and Cheese… It was the richest dish on the table, much too rich for my tummy, but it was delicious!

Tim had the Steak Dianne, and it was so much fun to see it flambeed table-side!  I wish I had taken pictures!

And to end off a WONDERFUL MEAL, I chose the Baked Alaska with Cherry Garcia Ice Cream and Flambeed Cherry Sauce… SOOO SWEET… SOOOOO RICH… and TOOOO MUCH… I only ate half my dessert, and washed it all down with a decaf Cappuccino.

 

I did make a mental note that if I was lucky enough to go to the Pinnacle again, to order the Creme Brulee… Tim and my Dad both  had it, and it looked incredible..  It has a perfect sugary crust, and was served in 3 different flavors….Oh Lord… I resigned myself to taking home a few pounds extra…

All of us were really tired after a very long day, and we were all STUFFED.  We said Goodnight to my parents, and after a chilly walk on the lido deck, we also retired to our cabin.  The beds were turned down, chocolates were left on our pillow (like we needed any MORE calories), and with 2 days at sea, we knew we didn’t have to set a wake-up call…. ahhhhh…. I hoped to have a LONG and restful sleep.

I was so incredibly sore, but so very happy to share these memories with my family.

Buenos Noches everyone…..

 

To Be continued…

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“I am so cold” I remember saying, as I followed my Mom into her bedroom….. My teeth were chattering in the middle of July.  I was chilled to the bone and uncomfortably so, yet I needed to strip the navy blue suit off me.  The gold piping along my pockets seemed too garish for such an occasion.  “Take it off” my Mom said “I will give you something to put on”.  She handed me an old sweatshirt and sweatpants and I put them on and climbed onto my parent’s bed, covering up with a blanket… I didn’t think that icy feeling would ever go away…..

We had just come from my Brother’s funeral.

And I was empty.

My brother was gone.

And so was I, or at least it felt that way.

Dave passed away two weeks after my 25th birthday, and I was ill-prepared for such an all-encompassing sadness.  I remember running on auto-pilot the first few days after his death, but as the funeral came to an end, and life around me just went on… I lost my place in this world.  Life indeed went on without me.  My friends still went to work, and still went for drinks on a Friday night…. My Boss still expected that I come into work each day…. There were still bills to pay, food to cook, toilets to clean…. and I still had a wedding to attend… MY WEDDING… but I couldn’t do any of it.  I couldn’t even form a solid thought in my head… all I felt was EMPTY.

That day turned into 3, and I hadn’t yet taken off those sweatpants….  I cried all night long, and my days were filled with anything that would numb me out – I started watching soap operas… LOTS of soap operas…. and I began to knit LONG swatches of fabric, only to rip them out violently and start all over again.  Food meant nothing to me, having my hair done meant nothing to me…. time meant nothing to me….  I initially crawled into the rabbit’s hole to protect myself, but I kept creeping further into darkness until I couldn’t find my way out.

I pulled myself together long enough to walk down the aisle… I looked very put together that day – smiling, hugging, playing the quintessential hostess, but inside was a different matter entirely.

I pulled myself together long enough to go on my honeymoon, and come home with stories to tell…. and then I promptly fell apart.

I never went back to work.

My thoughts were no longer my own.

The darkness went from old friend to evil foe….

I admitted that I was on a runaway train headed for nowhere…

I admitted that I was powerless to my depression

I spent the next 8 months getting help.

I always looked back on that time as the most life-changing period of my life.  As time went on, and both medication and therapy helped me grieve over the loss of my brother, I began to find myself again.  It was hard for me to accept that the ME I was had been forever changed, but I learned to like the new ‘me’.  I eventually climbed out of that  hole, and into the land of the living again…  but part of me lived in fear that the darkness would eventually come back…

and it did…. 6 years later,

When I became ill.

Once you have been depressed, you never forget the feeling.  But it has a way of slowly sneaking up on you and ever so lightly putting its arm around you like a long-lost friend.  The isolation can be inviting when you are overwhelmed with life – the empty room lures you in, and then LOCKS you in…. It makes you thinks that the choice is yours, that you can come and go as you please…. and then it binds and gags you and renders you helpless. IT decides how long it will stay…

When depression first hit, I let it control my every breath… when it hit the second time I wasn’t that willing to hand over my life… I fought hard….

and it was ugly,

and it was vicious,

and it was all I could do to keep waking up each morning and fighting all over again…. but I did it.

And I keep doing it…just  because chronic pain and depression are friends with one another doesn’t mean they are friends of mine.

My pain would like me to end the fight.  My pain would like me to surrender.  My pain would like me to jump back into the rabbit’s hole…. but I won’t give it that kind of satisfaction.

Although I cannot control those feelings from entering my life, I DO have a say in how long they stay.

Pain has taken away a lot…. but I won’t let it take away my happiness.

You know what they say….

Living well is the best revenge…

and it is the way I choose to attack the darkness.

I am human, and still get depressed from time to time, but I know now that I don’t have to let it control my life.

Depression is a chronic illness, but it doesn’t have to be a terminal illness.

There will always be darkness, but it is up to me to let in the light.

I have been house-bound for the last 10 years, but I no longer watch soap operas… I have more useful things to do with my life…

And just so you know, I have thrown away those sweatpants my Mom gave me years ago…

I don’t need them anymore.

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MANY people in the world of Chronic Illness have seen this meme already.  It is designed to promote National Invisible Illness Week.  Even though I added this Meme to Graceful Agony when I first started this site, I feel compelled to do it again.  As I mature and grow through this journey of Chronic Illness and Chronic Pain I have noticed that some of my ‘answers’ to the following questions have changed…

So here is my updated list!

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is:
I live with a combination of illnesses actually. You could say I was born with an invisible illness, and have struggled my whole life, so I am no stranger to this journey!   I have congenital heart disease, severe Fibromyalgia, severe Myofascial Pain Syndrome, Insomnia, TMJ Disorder, Ligament Instability, Si Joint Dysfunction, Unclassified Nerve Pain, Chronic Pelvic Pain, and Endometriosis.

2. I was diagnosed with it in the year:

That would be a hard question to answer….. I was born with my heart problem, I was diagnosed in my early teens with ‘fibrositis syndrome’ which was actually fibromyalgia, but lacked the fancy name in the 80′s ;) as well as TMJ Disorder, but the rest of the conditions have been diagnosed in the last 6 years.

3. But I had symptoms since:
I have had symptoms all my life really, but they became worse after the birth of my son, and unbearable just over 4 years ago when I was going through devastation in my marriage….. some people have a nervous breakdown… I guess I had a physical breakdown.

4. The biggest adjustment I’ve had to make is:

The Biggest adjustment(s) I have had to make is changing my lifestyle and knowing my limitations. Before I was seriously effected by my illnesses, I was a very active young woman. If you had asked people in my life back then a bit about who I am, most would have said I was ‘bubbly’ and ‘sociable’ and ‘energetic’. Sadly, because of my pain, I still feel like I am the same person on the inside, but I am not as sociable or energetic anymore because my pain causes me to ‘hibernate’ a lot.

5. Most people assume:

I don’t know what most people ‘assume’ truly, I’d be only guessing…. I think the people in my life that love and support me don’t assume anything, because they have been through this every step of the way with me, and they know that ‘assuming’ anything is not the way to go…. they communicate with me and wait for me to lead the pack so to speak.  In saying that, I also know that I have been misjudged and misunderstood by people in my life, and would go as far as saying that I have been stereotyped and treated unfairly.. those people are no longer in my life.  Life is too short to hang on to those who aren’t worth your time.

I am blessed to have parents who are AMAZINGLY supportive, a partner in life who loves ME, and has never seen anything other than who I am, and is proud of me every single day.  I also have the world’s best son!  My little dude has a really great understanding of this life, and I hope it leads him to have only compassion for people’s differences.

6. The hardest part about mornings are:

The hardest part of the mornings is simply getting up! I am almost ALWAYS in agony when I first wake up in the morning, and not mobile. On really bad days my honey brings me my meds and a coffee in bed, so I can wake up slowly and start moving slowly…. On regular “bad” days, I can get up and get my own meds, and then I try not to move too much until my body warms up a little…. that is ALWAYS followed by some light stretching and a HOT bath, and then I am usually mobile after that.

7. My favorite medical TV show is:

I love ALL medical shows! I wish Dr. House was my long-lost uncle or something ;) …. he would have the “cure” for me in under an hour :) ER was another of my faves (I have the last season on my iPod), and I love Grey’s Anatomy, Private Practice, Mercy… you name it! I cannot be a Doctor in real life, but I’d love to play one on TV!

8. A gadget I couldn’t live without is:

Another hard question! As with a lot of my online chronic friends, gadgets seem to be my bestest friends, and they make my life a LOT easier! My laptop, my blackberry, my iPod Touch…. and my new Sony Reader! I LOVE THEM ALL! Just ask my honey, because they are USUALLY all brought to bed with me every night! (Yikes, that is not very romantic, is it?)… and I have been known to blog in the bathtub from my iPod…. and yes, I have dropped my smartphone in the bath ONCE…. see.. I told you, they go EVERYWHERE with me!

9. The hardest part about nights are:

The hardest part about nights is PAIN, and what comes with the pain…. feeling alone, 4am baths, sitting on the couch in the dark by myself, or not being able to cuddle because I am too sore….. Pain is often isolating, and that isn’t something that I have gotten used to yet. My honey gets mad when I tell him I have been up all night with pain, and usually asks me why I haven’t woken him up, but I don’t think it is fair that BOTH of us are up all night.  I work hard NOT to let depression creep in during those isolating times.

10. Each day I take __ pills & vitamins. (No comments, please)

It varies depending on how much pain I am in, but on a good day I take 5 different medications throughout the day, totaling  15 pills a day…. On bad days the number goes up in relation to how much pain I am in….. I will probably end up on 7 different medications, and god knows how many pills in total that will be.

11. Regarding alternative treatments I:

Regarding alternative treatments, I have pretty much tried everything other than doing the Macarena while standing on my head! I have tried acupuncture, acupressure, craniosacral therapy, massage, chiropractic, holistic, naturopathic…. yep, you name it, I have tried it!

12. If I had to choose between an invisible illness or visible I would choose:

When I first answered this question, this was my answer..  ‘If I had to choose anything, I simply wouldn’t. I would choose a life without illness period. But because that isn’t the case, and we don’t live in Utopia, I will choose exactly what I have… and hopefully the courage to teach others what it is to be like me everyday. Promoting awareness, compassion, and education might hopefully, one day, change the world in which people like me live.’

The gist of my answer still rings true today… I believe there has been a change in the conviction I feel though.  Today if I were to choose between having an Invisible or Visible illness, I would choose Invisible hands down… And this is why… For a very long time I thought that the only option I had to be happy was to not have illness of any kind.  I was wrong.  I have a VERY full and rewarding life… NOT the life I ever thought was possible for me.  I have met so many amazing people through Graceful Agony, and I would NEVER want to say goodbye to any of them.  They have added so much more to my life than I ever thought possible… so if illness is what has brought us together, then I can accept that.  I choose MY life, the way it is..

13. Regarding working and career:

Regarding work and career, my pain, and being the best mom I can be, IS my full-time job. I hope one day that I can make a career our of writing, and being a patient advocate in some capacity.

14. People would be surprised to know:

People would be surprised to know how soft my heart truly is… I have been fearful at times that my illness has made me either less approachable, or more hardened or jaded…. People that have known me for a very long time know that I am a softy….. but people who meet me now… I am not sure how they view me. I cry at the drop of a hat, during commercials, when I listen to music….. I spend a lot of time thinking about OTHER people, and probably not so much time thinking about myself. I always have everyone elses best interests at heart, and that can cause internal battles for me at times.  You can say I am a people ‘pleaser’, but not because I have to, it is because I WANT to.  That is who I am.  Somehow when intense and chronic pain gets involved I think that may get lost in translation somewhere.  I think I sometimes come across as being a lot more impatient and cold than I truly am.

15. The hardest thing to accept about my (not-so-new) new reality has been:

I think that answer might change from day-to-day, depending on where I am at with my pain level, and what I am doing. Life has a way of throwing you new curveballs every day…. And if you were to ask me that question 4 years ago, I am sure the answers would have been vastly different from today.

The thing that I often discuss with the ones I love is that THEY have created normalcy around my illness. They have HAD to… so when I say “I’m having a really bad day today”, they aren’t surprised by that. But for myself EVERY bad day I have is like THE VERY FIRST BAD DAY…. I haven’t gotten used to being in agony…. I mean, I am USED to it from the standpoint that it happens all the time…. but it still feels as intrusive and shocking to me as it used to…

The other thing that I haven’t gotten used to is what an all-encompassing impact my illness has on everyone I love.  Chronic Pain is a family illness…  I don’t ever get used to seeing the helpless look on my Dad’s face, or seeing a tear in my Mom’s eye.  It gets NO easier to deal with my sisters discomfort when my pain is brought up in conversation, or when my honey gets angry with my pain… I am still trying to learn how to separate ME from my pain during those times… I feel really bad that my pain hurts others… I am trying to NOT take responsibility for hurting my family.

16. Something I never thought I could do with my illness that I did was:

Something I never thought I could do with my illness has been to have someone love and accept me completely EXACTLY as I am….. baggage at all. When my marriage was coming to an end, I had completely resigned myself to the fact that nobody would love me the way I am, and that I was totally okay with being single or ‘alone’. Out of the BLUE an old friend came back into my life, and it was LOVE AT FIRST SIGHT (or 100th sight really, since we were friends years ago)… We spent MANY MANY hours on the phone talking before we ever met for coffee… I wanted him to know exactly what my life was like….. He didn’t think it was an issue in the least bit! He kept saying things like “you are my hero”, and “Wow, I cannot believe all the things you go through, I have so much respect for you.”. It was a point of view that I was really not ready for…… 19 months later he has been with me through thick and thin. He is truly my best friend, and we have a love that has risen above everything that has been thrown our way. I want nothing more to spend every day of my life with him….. and I am surprised that I have been so blessed.

17. The commercials about my illness:

What commercial there are about my illness, do not depict ANY of the illness accurately! They drive me crazy! Take a pill, and in 30 neat seconds that look more like a musical montage than real life, POOF! You are happy and jogging down a sandy beach with your golden retriever…… crap, can I have a pill like that?!?!?

18. Something I really miss doing since I was diagnosed is:

I miss the little things….. having the energy to get up and go, watching my son’s Christmas concert without having to worry about how hard the seats are, how long I will be sitting for, what price I will pay the following day……. It isn’t BIG things like ‘Oh I wish I could go skydiving still!” or “I really miss alpine skiing!”…. I really miss just NOT having to be aware….. I am hyper-alert every minute of every day, and it is TIRING! The first thing I think about in the morning when my eyes open is what I have to do just to get through the day…. I always have to be 10 steps ahead of the game….. if I have a coffee date at 5pm, I have to modify everything I do so I know that I will be mobile and functional by the time 5 rolls around….. I miss NOT having to think in those terms…. I miss not having to think of my pain every second of every day whether my pain is bad that day or not…. I always have to be 5-10 steps ahead…… it prevents me from living in the moment at times.

19. It was really hard to have to give up:

In a word, FREEDOM…. Physical, Mental, Emotional etc….. There are a million things I have given up, but they always end up being about one word…… freedom.

20. A new hobby I have taken up since my diagnosis is:

I don’t know if I have taken up any new hobbies….. I have always loved to read, and know I read just as much, but maybe I read about different things…. But other than that, all my hobbies are pretty much the same – making jewelry, knitting, crocheting, reading, spending time with family etc.

21. If I could have one day of feeling normal again I would:

If I could have one day of feeling normal again, I don’t think I would do it. If it was only ONE day, and the following day I would go back to feeling this way, I think the EMOTIONAL price I would pay for that would be more than I am willing to pay.  DOES THAT SOUND CRAZY?  I am now at a place in my life that I have no muscle memory or recollection of what it was like NOT to have pain…. I honestly don’t remember now… and I think if I had one day to feel that way, I would have to deal with all the depression and emotion of accepting a life with pain all over again….. I hope that makes sense.

22. My illness has taught me:

Where to start with that one?!?……. My illness has taught me a million things! Mainly though, it has taught me how strong of a woman I am, how much I am loved, how the human spirit can bend and break, but it becomes stronger at the broken places…. It has taught me what strength, and courage, and perseverance truly mean…..

It has also taught me that there is strength is numbers.  There is a united front in our online community – and the people who you may expect anything from the LEAST might just be angels that have been purposely put in your path… Thank you my earthly angels who are reading this…  I hope you know that my words mean nothing without you on the other end – reading them, loving me, and encouraging me.

23. Want to know a secret? One thing people say that gets under my skin is:

One thing people say that gets under my skin is “It could be worse!”….. um that is very easy to say when you are not the one having to live this life everyday…. That is a huge slap in the face.

24. But I love it when people:

I love it when people take the time to talk to me about what I go through, and really listen. I love it when I connect with people…. I love it when people take the time to give me encouragement, listen to me cry, put up with my rants, and don’t judge me.  Some of the most powerful words to hear are “I am so sorry you are going through this” and “I love you”.

25. My favorite motto, scripture, quote that gets me through tough times is:

My favorite thing that gets me through tough times is just to count my blessings…. it always looks much darker when you don’t stop and reflect on how many wonderful things you have in life, and how much gratitude can come out of a little bit of reflection.

26. When someone is diagnosed I’d like to tell them:

When someone is diagnosed I’d like to tell them that even though our experiences and or symptoms might differ, I am always here for YOU!  I hope to have the opportunity to share my experiences, my friendship, and to encourage you to have hope.  YOU are NOT alone!

27. Something that has surprised me about living with an illness is:

Something that has surprised me about living with an illness is that it has made me tolerant of things that I normally would have not been, and it has proven to me that I am stronger than I EVER thought I could be.  My will, courage and fortitude has ended up being something very different from what it used to be.

28. The nicest thing someone did for me when I wasn’t feeling well was:

I don’t know that I can answer this question with one answer….. There are so many nice things that people do for me when I am not feeling well! My honey is the greatest (okay okay, I am sure that you are probably getting sick of hearing that already ;) ), and he is FULL of wonderful things that he does day-to-day… from bringing me my medication, rubbing my back, reminding me of my strength when I forget… holding me as I sob, and not judging me…… My parents are ALWAYS just a phone call away to talk me off the ledge when I have had enough, they love me unconditionally, and the power their love has brings me to tears.   I have some AMAZING online friends who are ALWAYS there to listen to me…… The thing that makes the most difference when I am not feeling well is to simply just have someone ‘there’ and to know that I am not alone.

29. I’m involved with Invisible Illness Week because:

I am involved because THIS is who I am.  I AM Graceful Agony… and I do this for others who walk this road as well.

30. The fact that you read this list makes me feel:

The fact that you read this makes me feel loved! THANKS EVERYONE!!!

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This is what I feel like this morning:

But this is what you see:

While I:

I just want to:

After a night of this:

And this:

And a LOT of this:


So today I am really trying to be this on the outside:

When on the inside I feel:

It’s one of those days in the life of an invisible illness that the outside doesn’t reflect what’s on the inside….

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