Monday, May 26, 2014

This Weeks photos

I hope you enjoy this week's photographs :)















Monday, May 12, 2014

Fibromyalgia Awareness Day! What the heck is that???

Today is National Fibromyalgia Awareness Day.  

For those of you that don't know what it is & are interested in learning a little about it...Here I go to the best of my ability

 Fibromyalgia is a musculoskeletal disease that affects the nervous system.  The best way I have found to describe it is that basically your entire nervous system goes into overdrive and becomes hypersensitive.  So much so that even the touch of fabric upon the skin can cause great pain.  It is not fully understood nor is there a cure at this time.   It can present differently in each individual person but most people that have fibro have had some sort of physical trauma in the past, be it a  car accident, chemotherapy or abuse to name a few.  

There are numerous symptoms that are associated with fibromyalgia. . Its characteristics include widespread muscle and joint pain and fatigue, as well as other symptoms. Fibromyalgia can lead to depression and social isolation.Some patients with fibromyalgia have pain and achiness around the joints in the neck, shoulder, back, and hips. This makes it difficult for them to sleep or exercise. Other fibromyalgia symptoms include:

Abdominal pain
Chronic headaches
Dryness in mouth, nose, and eyes
Hypersensitivity to cold and/or heat
Inability to concentrate (called "fibro fog")
Incontinence
Irritable bowel syndrome
Numbness or tingling in the fingers and feet
Stiffness


The disease can range from mild to severe and everything in between.  Some people are fine most of the time unless they are having a flare while others(like me) find that the symptoms never go away but sometimes are a little less than others.  

Treatment for the disease can include one or any combination of all of the following:  Medication, lifestyle changes, medical marijuana, gentle exercise, alternative therapies, massage therapy and/or physical therapy.

Results vary by patient just as the disease varies by each patient.  

People don't always know what to say or what they can do if they know someone and/or are friends with someone who has fibromyalgia.  The best advice I can give is to treat them as you would want to be treated(as you should always anyway throughout life).  Don't judge. Be kind.  Be a true friend.  Be open to the information that is readily available to learn more about the disease.  Don't forget that they are still the same person you always knew....they just may not be able to do the things they did before.  Be patient with them, in most cases, their entire lives have changed and their bodies have betrayed them. And last but not least, ask them what they need or want.

Thank you for taking the time to learn a little more about a not fully understood disease.   Please share this ...you never know who you may be helping.  A little awareness can go a long way!  :)  

Monday, April 7, 2014

ATTN: FIBROMYALGIA FRIENDS, FAMILY, LOVED ONES & CARETAKERS TAKE NOTE, YOU CAN HELP!

On March 26, 20I4, I had the opportunity to actively participate in a webinar/meeting with the FDA.  The subject of the meeting was " Fibromyalgia Public Meeting on Patient Focused Drug Development" The purpose of this meeting was to discover, from the patient's point of view, what the FDA/researchers/drug companies can most do for patients to help alleviate symptoms.   The information from this meeting will be publicly shared with not only drug companies but also researchers.  It is our chance to be heard.  

I am going to post the link that the FDA provided as they are encouraging patients, caregivers, and other stakeholders to comment upon the meeting and the questions that were posted that were the basic guideline for the meeting. In OTHER words, they want to hear from you too.   

I feel strongly that as a patient, of a disease that there is no cure for and they aren't even sure of exactly why we have this disease, that we have a responsibility to ourselves to try to help researchers & doctors to find the answers we need so that maybe we can play even a small part in finding a cure for our disease and gaining back some semblance of our former selves. 

When commenting, as a patient, we can answer the questions listed and provide any other information that we feel is pertinant and helpful. They welcome comments though from anyone who is effected in any way by this disease so please share this link with your loved ones so they may comment also.   Here is what the FDA had to say after the meeting: 


"We know that not everyone who wanted to come to this meeting was able to attend. For anyone who missed the meeting or is interested in what was discussed, we have posted a full recording of the meeting on our website: 


In addition to the input we gathered at the March 26 meeting, we encourage fibromyalgia patients, caregivers, and other stakeholders to submit written comments to the online public docket. 

The comment period closes on May 26, 2014. 

Submit your comments through this website:


FDA is particularly interested in hearing patients’ perspectives on the questions outlined in the Federal Register Notice that announced this meeting. These questions are pasted below for your reference, and the Federal Register Notice can be found here: 


The focus was truly on the following questions (as provided by the FDA): 



Discussion Questions
Topic 1: Disease symptoms and daily impacts that matter most to
patients
1)      Of all the symptoms that you experience because of your condition,
which 1-3 symptoms have the most significant impact on your life?
(Examples may include chronic pain, fatigue, difficulty concentrating, sleep
disorders, etc.)
2)      Are there specific activities that are important to you but that you cannot do at all or as fully as you would like because of your condition? (Examples of
activities may include sleeping through the night, daily hygiene, driving,
household chores, etc.)
a)      How do your symptoms and their negative impacts affect your daily
life on the best days? On the worst days?
3)      How have your condition and its symptoms changed over time?
a)      Do your symptoms come and go? If so, do you know of anything
that makes your symptoms better? Worse?
4)      What worries you most about your condition?
Topic 2: Patients’ perspectives on current approaches to treating
fibromyalgia
1)      What are you currently doing to help treat your condition or its
symptoms? (Examples may include prescription medicines,
over-the-counter products, and other therapies including non-drug
therapies such as exercise.)
a)      What specific symptoms do your treatments address?
b)      How has your treatment regimen changed over time, and why?
2)      How well does your current treatment regimen treat the most
significant symptoms of your disease?
a)      How well do these treatments improve your ability to do specific
activities that are important to you in your daily life?
b)      How well have these treatments worked for you as your condition
has changed over time?
3)      What are the most significant downsides to your current treatments
, and how do they affect your daily life? (Examples of downsides may
include bothersome side effects, going to the hospital for treatment,
restrictions on driving, etc.)
4)      What specific things would you look for in an ideal treatment for
your condition?




My hope is that this post has been helpful and informative.  Additionally, I hope for relief of our symptoms to be in our near future!   (((((((((Gentle hugs))))))))) 

Monday, March 17, 2014

@project365 Week of 3-9 through 3-15 Enjoy!

I hope you enjoy this week's selection!  Enjoy!   I am looking forward to spring and hoping & praying that it gets here quickly!

Roxie Loving her bed! 





Early Morning Play on Light 





















Sunday, March 9, 2014

Week of March 2-8 #project365

This weeks photos range from pets to landscape to an accidental interesting photograph.   I hope you enjoy perusing them as much as I enjoyed taking them ! I've included a couple of extras this week just for the heck of it!  





Roxie has been on a new diet due to her pancreatitis.  She is doing well but she is getting used to being fed around certain times.  Just in case I forget, she brings me her bowl.  I've been trying to catch her on film but she's been so darn fast & quiet about it that it took 2 months to catch her...but I finally have :)  




This is Lulu's spot on the couch.  On this particular day, it was a little chilly in the living room.
She tucked herself into the blanket to stay warm.  :) 




Mountain Creek, NJ 



                                        







Sometimes in life, something negative can turn into something interesting and beautiful! I had a spasm while trying to take a picture and this is the result.

I was at the post office this week and saw this adorable little girl!  She was an absolute sweetheart.



Hopefully there won't be too many more of these beautiful winter wonderland shots.  I can't wait for the spring.



Lulu having a staring contest with an elephant!



Poor Lulu, Lost a staring contest to an elephant!


Have a great week!  Please feel free to share my photos with your friends!  


Saturday, March 1, 2014

#project365 February 23 through March 1st. Enjoy!

I Please enjoy this weeks photos for #project365.

I'm also enclosing some extra photos from last night's outing with my honey & his family. We had a wonderful time and will be resting the next couple of days.





















Wednesday, February 26, 2014

Change in Photo Posting Format.

I just wanted to post a quick note to let everyone know that I have decided to change the format in which I post my #project365 photos.  Be rest assured that I am still taking photographs daily.  As a matter of fact, that is exactly why I am going to be posting weekly from now on.  I tend to take photographs throughout my day, but the truth is that I am always looking for the next best photo.  So I find myself, not wanting to post anything until my day is done, just in case I come across a better photo for the day.   So rather than stress myself at bedtime, I've decided to do what's best for my body and post weekly to avoid the nightly stress.  I do want to encourage everyone to please share my photos with your friends if you like them.   

I want to thank my followers.  It has helped to know that I hold myself accountable to my readers.   See you soon :) 




As to not disappoint, here's an old photo that has nothing to do with this project...lol 


Tuesday, February 25, 2014

Abraham de Lacy Giuseppe Casey Thomas O'Malley

is the name of my beautiful male orange tabby cat.   

Almost 7 years ago, I moved into a teeny tiny little cabin with my kids.  Shortly after moving in, I discovered a mouse.  I don't do well with mice.  Have you seen the cartoon that shows the woman in the apron jump on top of the table screaming because there is a mouse.....yeah well that's me...literally, I jumped on the table.  


So now I have a dilemma, I can't stand the thought of using the typical mouse trap and since I just scream and jump, how would I release a mouse from a humane trap.  At that point, I decided to get a kitten.  Mice hate cats.  

I've always wanted to adopt an orange tabby and name him "Abraham de Lacy Giuseppe Casey Thomas O' Malley".  

I found my Thomas in the Butler area.  He was only a tiny guy.  This is his story as told to me by the shelter.  Thomas began his life as a feral cat.  His mother, sibling and him would show up at a house that was putting food out for them every day....until one day, it was only Thomas. His mother and sibling were gone and this teeny tiny kitten was left on his own.  The person who had been feeding them could not keep him so she contacted the shelter.  They put him with a  foster home.  The foster mother fostered a lot of cats apparently.  She kept the cages in the garage and once a day would open the door to let sunlight in while she took the cats each out of their cage to clean it and feed and water the cats.  For the couple of minutes a day that he was held, there was also a large dog that would bark while she was doing this.   He had been with the woman a couple of weeks when I found him and adopted him.  

Thomas was scared.  He had only been held a couple of minutes a day while a dog barked at him.  His trust needed to be earned.  

When I first brought him home, I kept him in my room & the little storage sun room off the back of the house.  I slowly earned his trust and then for very small time, introduced my dog, Bagel(the dog love of my life but that's another story).  Bagel loved to bark.  He was a beagle.  Thomas slowly trusted Bagel.  Greg was the next human he trusted because for a while there, I didn't let the kids in my room so that Thomas would have time to adjust.  Slowly, each of the children earned his trust.  

Thomas is amazing.  After everything he has gone through, he has become an integral part of our family.  He trusts us.  Bagel & Thomas became extremely close. So close in fact that my son, Jeremy and his friend Tyler tried to rename Thomas..... Croissant  LOL.    Eventually, our family changed as Roxie joined the family.  Roxie was a puppy so Thomas instinctively knew to avoid her.  Eventually, Bagel passed away.   It wasn't until then that in their grief, Roxie & Thomas soothed each other and became so close that he will climb into her bed and sleep with her.  

Thomas' fear of strangers & dogs has not changed.   Thomas will hide if someone comes over unless he has gotten to know them because they are here often.  There was one time when a co-worker of mine came by with her mother in law's dog.   When Thomas realized there was a strange dog in the house, he ran from room to room trying to get out.  He banged his face into the glass doors upstairs and downstairs, even ran into the bathroom and hit the shower wall where I was able to shut the door behind him and slowly calm him down while my co-worker removed her dog from the house.  It was horrible.  He gave himself a bloody nose and a panic attack.   

Ironically, he was able to get out of the house a couple of times when we lived in the condos.(that's an odd story...creepy neighbor didn't tell me that Bagel started suffering from separation anxiety in his old age and howled while I was at work...but they figured out that my back downstairs slider didn't lock...so they opened the door and let my pets out...happened twice before I figured out what was going on and I put a pole to lock the door in place).  There was a large feral community of cats that lived on the mountain side.  Thomas went right to it, claimed a space and woman(even though he's neutered) and moved right in for a coupe of days till I got him back in with food.  He's tough in that environment.  But in our home, he's precious and loved and coddled.   

When we moved from on our own to the family we have become, there was some adjusting to be done by all.  

Lulu was the Queen of the castle here prior to our arrival.  I had gotten Lulu for Greg a couple years ago.  Greg taught her how to fetch. He doted on her.  She is a fresh little thing.  But this is Thomas' story so I digress.   Needless to say, Lulu didn't want to share her castle with anyone.  She didn't have exposure to any other animals prior to this(see Lulu's story when I write it ;) ) So it took a while to say the least.  As a matter of fact, it's still in the works.  

Turns out that because Thomas doesn't trust easily and Lulu considers him competition for her castle and all that includes, they needed a facilitator cat.  What's a facilitator cat you ask?   Cats can live together in a colony(whether small or large is invalid) but they need to share scent.  If they don't share scent, they would be considered competition.   In nature, a facilitator cat would assist in the sharing of scent.  The cat would rub on each cat creating a unique combo scent that becomes the colony scent.  In nature, Thomas & Lulu would probably never be in the same colony because of their personalities unless there was someone who facilitates the scent making.  I became that cat by petting one and then the other.  Since then, there has been a lot of progress made.  They play now more often.  There have been occasions where they have sat together on the bed(they are still a little tense because each of them of tried to chase the other off the bed either by direct attack or growling.....but they are getting better).  They have each chosen a side of the couch so they share that.  We provided them with scratching posts & towers.  More and more of the house have become neutral territory.  I still have work to do...lol 

Thomas has the softest belly fur it reminds me of a bunny's fur, and he will roll over and expose his belly to be pet.  We have come so far.   His life story mimics Greg & my relationship.   Because of how I had been treated in the past, I came into this scared to death and slowly over time, I am trusting more and more.  Occasionally, I will even roll over and expose my soft belly to Greg for him to love.    







An Inspiration!



I am struggling with what words can I write that will convey why I am sharing this...And the only word that is appropriate is Inspirational!   I hope you enjoy this story about a boy and his dog as much as I did.







Wednesday, February 19, 2014

Posting Delay #project365

I've been making sure to take the photographs I've committed to but as you can tell, I'm running a bit behind posting them.   That being said, I present to you the last 3 days photographs and I hope you enjoy them!