It’s FINALLY HERE!!!!

Living ~ Not Just Surviving New Header Banner for out new home page!!!

We now have a new home page specifically designed for LNJS!!! And, yes, Unicorns have been included….along with several of my friends!!! 

 

Would love to hear back on impressions, thoughts, etc so we can get this tweaked and running smoothly.  Any feedback would be great….but GREAT feedback would be BETTER  🙂

 

So….now…gotta give a shout out to the ones that have actually not let me REALLY be alone when I want nothing but to sink into the abyss of the internet and skulk…

 

Just like them, their profiles and projects are as unique and varied as they are. Check out their ‘Social’ projects/profiles here:

 

 

 

 

 

These are just some of the friends and supporters I’ve had and made recently. They’ve all brought something different into my life with their views, honesty and friendships. They’ve each touched and changed, even if ever so slightly, my way of taking in the world around me. We should all be so lucky, and I hope you that you are.

 

Happy Saturday everyone!!!!!

 

Pillow Talk….If Only

This week was my 6 month anniversary since my pulmonary embolism. Yet, I didn’t even realize it until Thursday night….and THEN the party began!!! I saw some old friends I hadn’t seen in quite some time. With being one who talks and socializes a lot, I have only a very few close friends and family that REALLY know me or that I even let in emotionally. That being said, it was still a bit bewildering to me that no one had commented about it. It hadn’t even been remembered, not even my me  until two days after. Surprisingly, it was my Mom that reminded me of it. With my legs propped up as high possible, it was the pillow they were on that was the trigger.  It had been hers. It was with her through nearly all the times she suffered through her blood clots. This pillow is nearly as old as I am and it was one of the first things I acquired after she passed. It was only fitting that I should give it a home with me where it would be used in the fashion it was accustomed to. Now, if only this pillow could talk……..

 

That’s when it happened….the first guest to show up to my party was Mr. Self Pity himself….strutted on in like he owned the place!! ‘Well HELLO BABE….Missed me?’ Every bit of strength I had at that point eroded. I wept…just like the girl I am, I wept!! Thoughts of the last six months flooded my brain. Then the memories of previous experiences when the recovery was so much quicker, easier, and kinder. The set back from the week before with legs swollen the size of tree trunks and them only being about half that size now hadn’t helped matters any either. Mentally, I can leap off tall buildings, fly to the moon and back, but physically, I can barely walk across the room some days, my legs don’t hurt although carrying around the extra weight does tire me out quickly, and I can’t do everything I usually do during the summer. I’m just HERE!! And WHY?!?!?

 

The Agony of “De-Feet”

 

Next to show up was Self Loathing….oh, he’s a sly one…Looking down at my legs, I hated them for failing me. I hate how they look. I hate that I can’t motor them some days and others they are stinging, flaming, itching attachments that I are EXASPERATING!! Just when I think I’ve made it back to ‘normal’, my body reacts and just laughs like I’ve lost my mind..and when it happens, I nearly do. 

 

Then came ANGER!!! I’m angry that I’m not back to the ME I was before all this happened. I’m angry that I have to rely on others at times to do simple things that I should be able to do for myself. I’m angry at having to learn how to deal and cope with yet another facet of this STUPID disease. I’m angry that it’s taken from me. I’M ANGRY!!!!! I’m allowed to be and I have a right to be, but I also know that it’s ok, but to brush myself off and I’ll get back up only to gimp down this path of recovery until I reach the finish line.

 

This weekend though has brought me another perspective on this experience. I have SUPPORT!! Although it may not come in the packages you thought it would, it DOES eventually show up and I’m grateful for it. In the last two months alone, I have had the privilege of meeting some of the most amazing, wonderful, and MIRACULOUS women that it is MY honor to know. Some are bloggers, some are healthcare workers, some are students, but we are ALL survivors!!! If it hadn’t been for long texts, chats, comments, and photos that took place some very long nights, I don’t know that I would have been as open and sharing as I am now. Actually, that’s not true, I KNOW I wouldn’t be. It’s because of them that I took a thought of becoming more open with sharing and support that it grew from a thought, to a blog, and within the last three weeks, both Facebook and Twitter have been graced with my presence. 

 

 

This path I’m on isn’t as easy or rebounding as it’s been previously, but it has brought me friends that understand, commiserate, and get angry with me because they know. It’s brought caregivers a glimpse into our world of being caregivers to them by saying “I’m Fine”, ‘It’s Ok”, and more so that THEY don’t give up parts of themselves for us. Only to be the recipients of our gross temperaments once we do have that frustrated breakdown where everything and everyone is the enemy. It’s also brought me education in the form of our commonality and our differences when it comes to our clotting disorders. We are a very UNIQUE and SPECIFIC group of blood odd-balls all looking for the same thing….a cure….

 

To my friends and my followers…you amaze me every day and bring me such joy with your comments…It’s not MY strength that gets me through,  it’s the strength that YOU give to me.

 

Willoweagle 

 

Shadows of Life

 

 

 

 

Thank You

On Top Of The World – Imagine Dragons
Survivor Strong a video by Willoweagle

As I am sitting here going over the posts, stats, and comments of this blog over the past week, I am not only flattered and touched, but inspired again.

In sharing my son’s story, it was quite the decision. There were many things to consider. The first being in how would he respond. The second was would anyone be interested. On both, I was proven incorrect.

My son did respond, but not exactly the
way I expected. It was a totally positive one. I had expected to defend, in some degree, my reasons about why I had.  I was prepared to do just this on receiving his first call after posting. I had everything ready. None of it was needed. For that, I say thank you ♡.

As for my second concern, I must honestly and wholeheartedly say I’m flabbergasted and sincerely flattered!!!

For these posts to not only be a series and so personal, yet posted during the middle of the week, I am amazed and humbled by what the stats have proven it to be an unfounded and near grossly ridiculous.

I would be terribly remiss in not thanking you – the reader – in taking your time which there is so little of in our busy hectic day-to-day schedules for reading and taking this journey. It is because of you that I share. Support and understanding during a difficult, life changing experience is all anyone can ask for and on receiving it, a great relief. There are no masks here. This is real. This is life. Thank you.

Reflections ~ A Mother’s POV: Part IV

Tuesday, June 7, 2011 ~ As my car was growing wings racing to get to Andrew, a major revelation came swimming slowly toward the front of my brain begging to be noticed despite the chaos. Antithrombin…..3!!

“Barry. You’ve got to tell them something veRy important.” My voice was much calmer though i had no idea where the control was coming from.
“Now this is a long name so if I need to I’ll spell it out for you but it’s imperative that you tell the doctor that there’s a family blood disorder. It’s a clotting disorder. It’s life threatening. Its called Antithrombin 3. You hear me? Anti….thrombin…..3!!”
“Got it”
“You sure? ”
“Positive!”
“Hang tight. .. I’m coming! ”

Join Us

Check it out at Springpad or https://livingnotjustsurviving.wordpress.com

Posted from Willoweagle’s mobile world from my Samsung Galaxy III with WordPress for Android

♥ Words To Run By ~ Meet Sara ♥

♥Meet Sara♥

Another survivor shares her story of inspiration, strength, and overcoming the challenges of living with a blood disorder.

How does she heep her wits about her? She RUNS!

I want to introduce you to Sara. A wife, a Marathon runner….A SURVIVOR!!

Sara’s Story ⇨ Survivors Share

I’m a runner, writer, dog-mom, and self-proclaimed hot sauce connoisseur.

I’m also a survivor raising awareness daily about the devestating effects of blood clots.

Words To Run By

My story is not that different than anyone else. I graduated from college, started my first real job as a child welfare caseworker – a field completely unrelated to my degree, of course. I got married on 07/07/07 and we adopted two dogs – Grace and Sadie. Back then, I would have told you I lived a great life, until I discovered – and not without a whole lot of things going really wrong first – that there is more to life and more to me. I wanted more, I needed more, but I had no idea where or with what to start. 

The Clot Must Be Fought – Our Stories

So many lives….so many stories… Other survivors share:

Our Stories @ The Clot Must Be Fought

Affairs Of The Heart

Blood Is Thicker Than….

As we celebrate love’s ‘holiday’ tomorrow, remember that it’s all an affair of the heart and blood is thicker than water….

and for some, our own lifesourcefights our very existence it supports.

We are strong!We are SURVIVORS!!! ♥

 

Go Red For Women ♥ American Heart Association

Power To End Stroke

Stop The Clot

 

I’m A Survivor!!!!

My current battle with my genetic clotting disorder..I survived!!!

Christmas Day 2012:

Just barely three weeks ago…I cheated death by surviving the coroner’s ‘bread and butter’. I threw a saddle clot which stopped my heart for an unknown amount of time…but merely seconds on a clock. This disease/disorder/deficiency will eventually kill me unless human accident gets me first. I’m trying to find others to gather with me in searching for more answers to many unknown questions and alternative preventative treatments. If not a cure in my lifetime, than a cure for my son and his unborn children….Please help me in the fight against this silent killer

Post PE precautions where in order ESPECIALLY when the Orkin man showed up for his monthly visits at my work facility…

.

This is my original story:

 I am 2nd generation ATIII Congenital having my first DVT/VTE at age 19 which wasn’t diagnosed immediately as I was pregnant at the time. It wasn’t until after the delivery of my son and only after the insistent urging of my mother, that the possibility of my having this at that age was grudgingly given in too and after a very painful venogram, was finally diagnosed and was not just venous, but arterial. Why was my mother so insistent about what it was? It was because she had lived with recurring DVT/VTE’s for over half her life with her first being diagnosed directly after having given birth to me. My mother was the first generation, having skipped a generation through my grandfather. My sister is also an active ATIII Congenital. As of two weeks ago, I thought the only worry or concern I would have would be that any future granddaughters of mine would someday become active through my son, as in the years that I have researched ATIII the most common and recurring thread is that, usually, men are carriers not actively diagnosed. That has all now changed as of June 6, 2011 when my 22 year-old son was rushed to the emergency room for the third time in just as many days. He, once again, had a CT scan done of his head which revealed something perplexing to the physicians. The doctors were stumped until I arrived at the hospital where he had been taken and told them about our family genetic disorder. The final diagnosis was cerebral sinus venous thrombosis and accompanying brain bleed concurrent with stroke and  seizures secondary to ATIII Congenital. He too has now been tested and diagnosed with ATIII Congenital.